HeartKids Victoria

Quarterly Newsletter of
HeartKids Victoria
Support
Awareness
Research
Advocacy
ARN: A0021470B
ABN: 16 336 986 918
Spring 2007 Volume 17 Issue 2

HeartKids Australia
www.heartkids.org
The state-based HeartKids
groups listed below are the
members of HeartKids Australia,
which is a separate organisation.
Victoria and Tasmania
HeartKids Vic Inc
C/o Cardiology Department
Royal Children’s Hospital
Flemington Road
Parkville VIC 305
Phone: (03) 9513 9030
Email: heartkids@heartkids.org.au
South Australia
HeartKids of South Australia Inc
155 Hutt Street
Adelaide SA 5000
Purple Phone: 0406 165 111
Phone: (08) 8339 5996
Email: committee@heartkidssa.org.au
Western Australia
HeartKids WA Inc
PO Box 1554
West Perth WA 687
Phone: (09) 9340 7996
Email: heartkid@iinet.net.au
Northern Territory
HeartKids of the Northern Territory
PO Box 190
Howard Springs NT 0835
Phone: (08) 893 7958
Queensland
HeartKids Queensland Inc
PO Box 118
Underwood QLD 4119
Phone: (07) 3341 8145
Email:stainesfamily@optusnet.com.au
New South Wales and
the Australian Capital Territory
HeartKids NSW Inc
6 / 10J Hilltop street
Merrylands NSW 160
Phone: (0 ) 9 94 0800
Email: mail@heartkidsnsw.org.au
Vision:
Embracing the future
for HeartKids
Mission:
Australia will have a reduced
incidence of children with
heart disease, a reduced
mortality rate in children
affected by heart disease
and significant support will
be provided to HeartKids
and their families. This will
be achieved through the
development of: Research,
Support, Awareness and
Advocacy.
HeARTKidS ViCToRiA
HeartKids is an Auxiliary of the Royal Children’s Hospital, Melbourne
BoARd MeMBeRS
President Scott Reinke
Vice President Clare Fountain
Secretary D’Arne Finnis
Treasurer Michael Johnson
Support / Public Officer Belinda Frank
Human Resources Casey George
Marketing Jonathan Cullen
Webmaster Matthew Fitzgerald
PATRoNS
Professor JL Wilkinson, Cardiologist, Royal Children’s Hospital
Mr Ted Kitto, Kiwanis Australia Chairman of ‘Young Children
Priority One’
AdViSeRS
Medical - Prof JL Wilkinson
The role of HeartKids Australia, endorsed
at the recent 007 Conference:
Provide services to the State groups via
the Chief Executive Officer
Build substantial alliances with
corporations and governments on a
national basis
Raise awareness
Unify the efforts of all the State groups
Provide funding support to the State
groups
Lead the HeartKids agenda forward
in cooperation with clinicians and
researchers
Develop national programmes
Support State Managers in their work
Develop a national merchandising range
BRANCH & Coffee MoRNiNg Co-oRdiNAToRS
See Coffee Morning Page
VoLuNTeeR Co-oRdiNAToRS
Birthday Card Co-ordinator Julie Heather
Christmas Party Co-ordinator Kathy Petras
eMPLoyeeS
Project Manager Katrina Vojlay
Family Support Co-ordinator Tracy Stanley
Support Administration Co-ord. Lynette McCoullough
Newsletter Editor Margaret Patullo
Teen Editor Ben Byrne
Bookkeeper Australian Master Bookkeepers
a note to ReadeRS: Permission to reprint any of the personal stories in this newsletter is required from the author
or the President. Any other articles may be reprinted with an acknowledgement to HeartKids Victoria.
dISclaImeR: Please note that articles published in this newsletter do not imply endorsement and may not reflect overall
views of HeartKids. Also note that the opinions expressed in child stories represent personal experiences and that
medical details are specific to each individual case. Although the conditions may appear similar to your child’s, other
details may differ. Parents requiring more specific information should check with their child’s cardiologist.
Page HeartKids Victoria - Spring 007
•
•
•
•
•
•
•
•
•

A Word from Clare
iN THiS iSSue
SPRInG
As I write this I am sitting on a train enjoying the glorious
Spring blooms and freshness that comes with the
sunshine.
This newsletter is full of information, stories, profiles
and updates from the many corners of the HeartKids
community. I have provided an update on the HeartKids
Australia Conference that I had the privilege of attending.
As the role of consumer groups like HeartKids changes
and grows it is vital that you, our members, are kept as
the number one priority. As our organisation grows and
develops the Board and team ask the question ‘What does
this mean to our members?’.
With this in mind the Board has started to look at the
services provided to our kids and families in Victoria. How
are they managed, what are the plans for the future in
terms of physical locations, access to specialists, quality
and safety, etc. All very important questions. Our goal is
to work with the key stakeholders to ensure world’s best
practice is achieved for our kids and their families. What is
inspiring to pass on in these early stages is the commitment
received that the key stakeholders would also like to see
world’s best practice delivered in Victoria. We will keep
you updated on progress over the coming months.
The current level of professionalism and dedication
shown by the medical community is outstanding and I feel
honoured to have my HeartKid cared for in Victoria.
After the 2006 AGM I promised to make this my last year
as President of HeartKids Victoria. I have thoroughly
enjoyed being President for the past 2.5 years and would
like to thank the HeartKids community for their support
and passion over this time. I will remain on the Board as
Vice President for the interim period before becoming a
general Board member. Handing over such a privileged
position has been made much easier due to the calibre
and personality of the new President, Scott Reinke. He
brings with him a wealth of corporate and Not For Profit
experience along with the ‘specialness’ of being a HeartKid
Dad. He has shown an enormous amount of dedication to
HeartKids since joining the Board and I am looking forward
to supporting him as he takes on the role.
Volunteering for the community has always been part of
my life and values and I continue to look forward to being
3 President’s Report
4-5 diary dates, Notes & News
6 Profile on Richard Costanzo & Versace
7 A Word from our executive Manager
8-9 Thanks & farewell to Alison Byrne
10-12 Tony’s Story
12 Centrelink Announcement
13 Jaiden’s Wish Came True...
14 family Support Report
15 Social Work Matters
16-17 Coffee Mornings & Branch News
an active participant in both
the Victorian and Australian
HeartKids community.
There are two people who I
would like to thank for their
dedication and commitment
to the HeartKids community.
Deborah Culhane has resigned
from the Board as she needs to
spend more time with her family. She has made a fantastic
contribution over the last 6 months providing invaluable
legal feedback and support. Thank you Deborah.
The other person who I would like to thank on behalf of the
Board and I am sure on behalf of everyone in the HeartKids
community who has met her, is our Executive Manager
Alison Byrne. After 18 years of dedication as a volunteer
and 6 years as an employee, Alison Byrne is heading
to pastures new. It is a challenge to put into words the
contribution Alison has made to the Heartkids community,
myself and our members. We wish her all the very best in
the future and look forward to keeping in touch. She is a
special lady with a very special heart.
I would like to introduce and welcome Katrina Vojlay who
is in a project management role until a new Executive
Manager is appointed.
Some of you would remember our Family Support Coordinator
Helen West. After having her baby she has
decided not to return to the role so on behalf of us all,
I’d like to thank her for the wonderful work she has done
with our families. As a result of Helen’s resignation I am
delighted to let you know that Tracy Stanley’s role as a
Family Support Co-ordinator is now ongoing and she is
wearing two hats – Family Support Co-ordinator and
Administration Assistant. The Family Support role is an
important one and we are proud to have such wonderful
people fill it – past and present.
With a new President, a Board vacancy and a new
Executive Manager we will be busy over the next few
weeks delivering results for you our members.
Thank you again for your wonderful support. Enjoy the
sunshine and dance for rain!!
Heartfelt wishes, Clare Fountain
18-19 Birthday & Personal greetings
20-21 Kids Pages
22-25 ‘Courageous Kristen’ - Kristen Potts’ Story
26-27 RCH News
29 HeartKids Australia Conference 2007
30-31 Research Projects
32-33 Celebrations and Achievements
34-35 Cuppa for HeartKids 2007
36-37 fundraising
38-39 Merchandise - Half Price Sale!
40 our Sponsors and Supporters
HeartKids Victoria - Spring 007 Page 3

diary dates
Membership subscriptions were due on 30th June - have you sent in your payment?
If you haven’t already done so, we would appreciate families completing page 2 of the Membership
form before returning it with the annual payment. We would like our member database to include up-
to-date information so we can better help families who ask “Has anyone else had a child with....?’
Kiwanis Brighton Breakfast - Saturday 13th october, 7.15am See enclosed flyer
Versace Luncheon - Wednesday 17th october, 12pm More information on page 6
VECCI Women’s Network - Wednesday 24th October, 5.30-8pm See enclosed flyer
Box Hill Miniature Trains day - Saturday 27th october
Myuna farm - Sunday 18th November
HeartKids Victoria Annual general Meeting - Wednesday 21st November
at 6pm - 7pm in the Boardroom on the 5th floor, Front Entry Building of the Royal Children’s Hospital
Christmas Party - Sunday 16th december See enclosed flyer
Teen Camp - friday 25th to Monday 28th January 2008
Venue: Campaspe Downs at Kyneton, www.campaspedowns.com.au
‘Run For The Kids’ - Sunday 16th March (On the Sunday before Good Friday)
good friday Appeal - friday 21st March
Supported by Kids Day Out activities at Telstra Dome
garden Party - April 2008
HeartKids Spectacular - May 2008
HeartKids Ball - July 2008
National Carer’s Awareness Week
14th - 20th October 2007
“Anyone, Anytime Could Be A Carer”
Carer Advisory Service 1800 4 636
If you are reading someone else’s copy of our newsletter and
would like to receive your own - why not join HeartKids!
Please return this enquiry slip to: HeartKids Victoria, C/o Cardiology Dept. RCH,
Flemington Road, Parkville VIC 3052
We will send you a HeartKids information pack with a member details form to complete.
We now offer 6 months free membership to parents of a heart child, or Adults with CHD.
For other members our annual fee for July - June is $20 (student concession is $15).
An initial pro rata fee for January to June (Autumn & Winter newsletters) is $10,
(with student concession $7.50).
Donations of $2 and over are tax deductible.
your Name: __________________________ Relationship to child: _________
Address: _______________________________________________________
___________________ Post Code: _______ Phone No: ____________
Heart Child’s Name: (if applicable) ________________________
Male/female (please circle) date of Birth: ________________
Date Month Year
Page 4 HeartKids Victoria - Spring 007

Notes and News
HeartKids Australia welcomes its first primary foundation sponsor
HeartKids is thrilled to have signed up the Pasta
Master group as its first primary foundation
sponsor.
Pasta Master has agreed to a significant annual
donation to HeartKids Australia to assist with
building capacity, to fund research and to
further develop its support services.
Pasta Master have a range of fresh pasta products displaying the HeartKids logo that can be
found in the chilled meat section of Woolworths, Safeway, Coles, and IGA in all States and
Territories.
We encourage all our members and readers to sample these fantastic products from a company
who really cares for children and who is working in partnership with HeartKids to address
Children’s Heart Disease.
HeartKids Victoria
Annual general Meeting
The Annual General Meeting
will be held on
Wednesday 21st november
from 6pm - 7pm
in the Boardroom on the 5th floor
of the Front Entry Building
at the Royal Children’s Hospital.
Cardiology Clinic
outpatient Appointments
if you are unable to attend your Cardiology Clinic
appointment at the Royal Children’s Hospital, please ring
as soon as possible to cancel - tel 9345 6400.
The Clinic staff have been surprised at the number of
families missing their appointments lately. Please do not
rely on a text message reminder, as Clinic staff are not
able to provide that service.
At this stage there are no appointments available till
January next year due to the increased patient numbers.
With the long waiting lists for appointments at the Clinics,
it isn’t fair that people are missing out on appointments
that other families are not keeping.
Please keep this in mind - when you ring and cancel an
appointment, that timeslot can then be allocated to a child
on the waiting list.
TeeN CAMP iS CoMiNg SooN……
The 2008 Teen Camp is open to young people, aged 13 - 21 who have a heart condition, from all over
Australia. Best of all you don’t need to pay a thing - it’s all included in your Heartkids membership!
If you haven’t been before come and try something new! For those of you who have, come and
reacquaint with old friends at an exciting NEW VENUE!
VeNue: Campaspe Downs Country Resort
dATeS: 25th – 28th January, 2008.
ACTiViTieS iNCLude:
AddReSS: 1302 Trentham Rd, Kyneton, Victoria.
Horse riding
Flying fox
WeBSiTe: www.campaspedowns.com.au
Abseiling
MoRe deTAiLS: (03) 9513 9030 and leave
Indoor heated swimming pool
a message for Belinda or Erin.
Indoor basketball stadium
eMAiL: heartkids@heartkids.org.au
Canoeing
HeartKids Victoria - Spring 007 Page 5

SPONSORS
AUCTION ITEMS
1. Versace Home Collection
Medusa Red Comforter and Sheet Set made in Italy,
consisting of:
King size red and gold comforter
King size flat sheet in red and gold
King size fitted sheet in gold
King pillow case set
RRP$2490.00
2. Versace Ladies Couture Handbag
“Snap out of it”
Black patent leather with suede Greek fret with silver
studs.
RRP $ 3525.00.
3. Crown Getaway
Gift Certificate for 1 night in a Deluxe Room including
Breakfast, dinner voucher & Valet Parking RRP $660.00
4. Palazzo Versace Getaway
Two nights accommodation in a luxurious Lagoon
Room at Palazzo Versace Gold Coast, including a full
buffet breakfast for 2 Plus a 6 course degustation
dinner for 2 in Vanitas Restaurant, inclusive of wines
selected by the hotel Sommelier conditions apply.
RRP $1600
Versace Luncheon
5. Versace DV One watch
Pink shinny ceramic case and bracelet, date, automatic
movement, mother of pearl dial, with rose gold plated
details.
R.R.P $4,999
6. A Day with Crown’s Executive Chef
Restaurant Operations- Andy North
This is a unique opportunity for a group of 10 people
to learn the skill of cooking from Andy.
The group will start the day by going to the market
with Andy and purchase the ingredients for a dinner
for 20 guests. Prepare the food with Andy in the
Crown kitchens and enjoy dinner with their partners
(maximum of 20 guests) at one of Crown’s restaurants
(to be selected by Andy).
R.R.P Priceless
RAFFLE ITEMS
1. Versace Ready-To-Wear wardrobe
conditions apply.
RRP $2500.00
2. Versace Dedalo 32cm wide vase in platinum.
RRP $1399
3. Versace fragrance hamper
RRP $500
4. Versace fragrance hamper
RRP $500
Profile - Richard Costanzo
What inspired you to become involved with
HeartKids?
My daughter was born with a heart condition and
spending the first 6 weeks of her life in the Royal
Children’s Hospital made me realise how important it
is to support organisations such as HeartKids.
Any funds raised for this organisation is great
as they need the generosity of others to help
them in their generous roles of providing support,
understanding and information to families of children
with heart conditions and improving patient and
family care in the hospital.
As my daughter’s heart specialist said to me “our
work depends on the generosity of others.”
How does this association benefit your
company?
The charity event we are organising with HeartKids
will show that we are ambassadors for charitable
events and it is also a chance for us to advertise our
new clothing range while at the same time raising
funds for a good cause.
Versace and Crown invite you for lunch
to preview the new season launch of
autumn /winter 2007/2008 ready to wear collection.
Master of Ceremony: Ms Ann Peacock
Venue: Conservatory
Level 1, 8 Whiteman Street Southbank
Date: 17th of October
Time: 12.00pm for 12.30pm
Cost: $145 inc gst
Contact: Mary Rose Elefano
Telephone: 9292 6250
Complimentary Valet parking available from Versace Boutique
Proceeds to be donated to the Heart Kids Charity Foundation Victoria
What is your job title?
Operations Manager of Versace Australia
What does your job entail?
Overseeing the retail, wholesale and buying
operations of Versace within Australia and New
Zealand.
What inspires you about HeartKids?
The fact that they are a not-for-profit organisation
who are really out there to help children and families
affected by heart conditions.
Who do you most admire?
MY WIFE!!!!!
What is your goal for 2007?
To spend as much time as possible with my family
and to establish a healthy balance in life between
work and private time.
What is your favourite family moment?
Coming home from work and having my daughter and
wife greet me with lots of love, hugs and kisses.
Page 6 HeartKids Victoria - Spring 007

A Word from our executive Manager
Dear Heartkids Community
Well, winter is moving in the right direction, and let’s hope
all the coughs and colds go with it. The rain has been
welcome and it should have washed away some of the
dreaded germs. I hope that you are all well and looking
forward to the coming warmer weather during Spring.
Ward chairs have arrived!
You will all be delighted to hear that the ward chairs have
arrived and if your child is an inpatient on the cardiac ward,
7 West, you will have a comfortable seat to sit in. Not only
a seat, but the chairs fold out into a flat single bed for you
to have a better night’s sleep.
new Parent Precinct
I am thrilled to announce that the Parent Precinct on the
Cardiac Ward is now in use. The space will give a welcome
respite for parents and a great place for our weekly coffee
mornings. The finishing touches are being finalised with
the kitchen being stocked with goodies to sustain our
parents, mugs, plates, cutlery, etc.
It just goes to show that a great night out frolicking and
prancing on the dance floor at our Shining Hearts Gala
Ball is all worthwhile. The funds raised at our last two
balls have contributed to the purchase of the chairs and
furnishings for the parent precinct.
time for me to move on…..
It is with much sadness that I have resigned from the
position of Executive Manager for HeartKids Victoria. My
last day of work was 28th September 2007. I have had a
close association with Heartkids for nearly 18 years, as old
as my heart child Ben, working for the organisation for the
past six and although there have been many challenges
along the way, the journey has been enjoyable, rewarding
and stimulating.
I wish to thank HeartKids for the opportunity of working for
you, I have learnt so much from the work itself, the inspiring
children and their families, our dedicated volunteers and
Board and the incredibly devoted medical teams that
treat our children. I have been fortunate in witnessing the
growth of our charity, the realisation of a dream in forming
HeartKids Australia and working shoulder to shoulder with
amazing people.
HeartKids has such a bright future, it has every opportunity
to develop into THE next children’s charity without a doubt.
I am very proud of what we as a team have created. I am
proud of my staff, Board and volunteers, and with all of
these incredible people HeartKids has developed into a
remarkable organisation.
Thank you to all the families who have sent their best
wishes, I will treasure your comments and kind thoughts.
My wall of photos in my office will remain as a constant
reminder of the special children and families I have had
the pleasure of meeting along the way.
I have given my heart, soul and life to HeartKids. It is
now time to find some balance, develop further skills and
seek challenges in a different environment. I view the
opportunity of working for HeartKids as a privilege being
such a special place. HeartKids has left an indelible mark
on my heart and soul - I will always be grateful for the
experience and will remember this time in my life with
great warmth.
I wish you all well, thank you for sharing the journey and
now as a member of HeartKids I hope to stay in contact.
Warmest wishes
Alison
Newly opened facilities in the 7th floor Parent Precinct nearby to the Cardiac Ward.
from left: dining area and Lounge Room, Kitchen, and Breastfeeding Room
HeartKids Victoria - Spring 007 Page 7

To Alison - Thanks and farewell
It all started with Baby Ben being born with a Congenital Heart Defect ........
Page 8 HeartKids Victoria - Spring 007

And it led to ........
Mother to four great young people Support Person to other Families
Willing Volunteer Family Fun Day Organiser
Heartkids Committee Member Heartkids Victoria President
Ward Visitor Baby Cuddler Santa’s Helper Teen Camp Leader
Strategic Planner Public Speaker Personal Award Recipient
Advocate Grant Seeker Fundraiser Marketer
Executive Manager RCH Committees Member Work Colleague
HeartKids Australia Board Member Inspiration to many!!!
I am sure you will agree that Alison Byrne has made a significant
difference in the lives of the children, families and communities
affected by Childhood Heart disease. On behalf of the Board, our
members, friends and associates we would like to thank Alison for her
18 years of dedication and passion and for providing firm foundations
from which we can continue to grow. She truly has a heart that shines.
Clare Fountain
HeartKids Victoria - Spring 007 Page 9

Tony’s Story
Like most couples expecting their first child, Scott and I
were excited and looking forward to the birth of our first
(and as it turned out only) child.
The pregnancy had been fairly normal with some morning
sickness, which disappeared after about three months,
much to our relief! We went for our routine ultrasound and
came away from that expecting that all was well with our
baby and that all we had to do now was to wait patiently
for the birth. Little did we know that when our baby was
born that it would be the beginning of many of the kinds of
worries and fears that we had never even dreamt about.
Our baby was due at the end of April 1994, but for some
unknown reason I went into early labour and after many
hours our beautiful baby was delivered with the help of
forceps on 22nd March, five weeks premature. After being
examined he was pronounced as being very healthy – just
a little on the small side. He weighed 2.19 kg. or 4lbs.
13oz. and we named him Anthony, which became Tony
immediately.
Of course he was the most beautiful baby we had ever
seen and seemed to be doing all the right things as far
as we novice parents could see. He was not interested in
sucking but we were told that this was due to his premature
birth, so he was being tube-fed and later fed from a tiny
little glass. His face was extremely bruised due to his birth
and he was also jaundiced, but these were all things that
were easily fixed.
He was being visited daily in the hospital by a paediatrician
due to his prematurity who early on said that Tony had a
slight heart murmur, but that this was not a major concern.
When Tony was five days old the paediatrician mentioned
that he was looking a bit “dusky” and asked the nurses
to keep an eye on him. Nobody mentioned to us that this
could relate to a heart problem so we didn’t really worry
about this until the paediatrician came back again later in
the day to check Tony again. This was when we realized
that there could be something wrong with our precious
baby.
Tony’s oxygen saturations (which we had never even
heard about) were 70% and even when he was put into
an oxygen box they did not change. This was when we
were confronted with the news that there was something
wrong with Tony’s heart, not just a murmur, but possibly
a combination of defects and that he would have to
be transferred to the Children’s Hospital in the NETS
ambulance. The hours of waiting for the ambulance passed
in a blur of tears and disbelief for both of us as our tiny baby
continued to become bluer. When the NETS team arrived
at Mitcham Hospital they prepared Tony for the transfer,
emptied his stomach and took a photo of him which they
gave to us. It was only later that Scott and I realised that
this photo may have been given to us because we might
not see our baby alive again.
the problem. At about 2:30am we were told the diagnosis,
which at that stage meant nothing to us except to increase
our fears. Tony was diagnosed with Complex Congenital
Heart Defects, in his case made up of Transposition of
the Great Arteries, Pulmonary Stenosis, Ventricular Septal
Defect and Patent Ductus. We were told by the fantastic
staff, who are so good at dealing with emotional parents,
that Tony was in a stable condition, so we should go back
to Mitcham Hospital and try to get some sleep.
We arrived back at Mitcham at about 4am but half an hour
later a nurse came in and told us that they had received a
phonecall to say that Tony had stopped breathing and had
been transferred to the Intensive Care Unit (ICU) and that
we should get back in there as quickly as we could.
We made the trip back to the RCH and found ICU, where
we were shocked to see our tiny baby connected up to all
kinds of tubes and machines with alarms going off at what
seemed like every few minutes. This was not in the books
about what to expect when you have a baby and we were
totally unprepared for all this, however we coped, and are
still coping, like all of the people reading this who have
gone through a similar situation with their child.
After three days in ICU Tony was transferred to the Neonatal
Unit and we were staying in Parent Accommodation at
the hospital. Whilst not a five star hotel we were grateful
We followed the ambulance into the hospital and arrived
there at about midnight. We were in shock and had not
ever stepped foot inside the Children’s Hospital before, but
managed to find our way up to 7 West, where Tony had been
admitted. When we got there we stood helplessly watching
and waited for a cardiologist to be called in to diagnose
Tony 3 weeks old in iCu
Page 10 HeartKids Victoria - Spring 007

to be able to be close to Tony and got used to watching
machines and also trying to express breast milk every 3
hours. We have strong memories of walking across from
our accommodation on the 5th floor in the middle of the
night to try to produce some breast milk for Tony. This
turned out to be a very difficult thing to do and after much
effort I was only able to produce about
20ml. at a time.
After six nights of living at the Hospital,
Tony was two weeks old and in a
stable condition in 7 West, so we
moved back home to Forest Hill. We
got into a routine of getting up at about
5:30am, visiting Tony and then Scott
would go to work whilst I spent most of
the day at the Hospital and he would
come back to the Hospital after work.
It was planned that Tony would have
a BT Shunt when he weighed 3kg. so
all we had to do was fatten him up.
Things didn’t go quite as planned and
we received a phonecall early one
morning to say that Tony was back in
Intensive Care. When we got into the
hospital we were told that the operation
would need to be done that morning as
without it Tony would not survive the
day. We had our first experience of handing over our baby
to be operated on. Nothing can ever be as hard as doing
that – it certainly doesn’t get easier with experience!
The operation went to plan and after three days in ICU
Tony was moved back up to 7West. Ten days later Scott
and I finally got to take our beautiful baby home. On the
way home we stopped to buy a pram and some other
supplies which we had been
too scared to buy earlier.
It was so exciting to finally be
home and Tony was an easy
baby. He slept well – we had to
wake him to be fed every four
hours and he was, and still is,
a joy to have around. Life got
into a routine and we tried to
push all our worries and fears
to the back of our minds. We
went to playgroup, celebrated
milestones such as teeth and
walking and generally treated
Tony as if there was nothing
wrong with him. We were
sometimes reminded of the
severity of Tony’s condition when strangers would advise
us that our child needed to be rugged up more as he had
blue fingers or asked us had he been eating a blue lolly.
Soon after his second birthday Tony was quite blue and
breathless and due for further surgery. We had known
all along that this would happen and were familiar with
the hospital so surely this would not be so traumatic?
Of course it was just as frightening for us as we handed
Tony over, this time for the first stage of a Fontan. Tom
Karl, Tony’s Cardiac Surgeon, operated on him again and
everything went to plan. Tony was in theatre for 4 hours
Top: Tony recovering after the 1st stage of the
fontan, and here he is, a couple of days after
surgery, in the 7W Playroom.
and came back into ICU at 4:30 in the afternoon. He
recovered very well and was not even in ICU for 24 hours.
How pleased we were to get out of ICU with its heat and
constant alarms. We were relieved to be back in 7 West
and amazed at Tony’s recovery. We were able to take him
home 5 days after Open Heart Surgery. Again we watched
our son recover and enjoyed his new
found energy and colour. We couldn’t
even hear him coming into our room in
the mornings as he wasn’t puffing with
every step he took.
Tony started kinder but gradually, as
we had been told but didn’t want to
believe, Tony again became blue and
breathless. I am sure he must have
wondered what kind of a weird mother
he had as I must have looked at his
fingernails and lips a hundred times a
day, trying to convince myself that they
weren’t really getting any bluer. Every
time we went for a check up I used to
hope that when clinic nurse Merridee
measured his oxygen saturations that
I would see some acceptable number,
but as expected they continued to
decrease and it was time for the second
stage of the Fontan.
Again we prepared as much as possible for this surgery,
with thoughts that the last one had gone so well, surely this
one would be the same. At the age of 5 ½ we handed him
over into the capable hands of Tom Karl and began to count
the minutes until he was back in ICU. After the expected
4 hours we received the call that Tony was back in ICU so
began to relax a little bit knowing that the operation was
over. Now we just had to get him back up to the ward.
This time however there was a
bit of a hurdle. Tony was in ICU
but going downhill rapidly and it
was decided that he needed to
go back into theatre and have
a fenestration (a hole put into
the connecting tube to relieve
the pressure of bloodflow to the
lungs) and if this did not work
the operation would have to be
taken down. We were told that
this would take about 1 ½ hours
but in fact it was 3 hours (which
seemed like 3 days) before we
saw Tony in ICU again. The
fenestration had worked and
after that all went well and Tony
was moved back up to the ward the next day and home
after another week. This time he was on a fluid restriction
of 600ml over 24 hours, but Tony coped really well with
this. He always asked, “Have you measured that?” before
having a drink or yoghurt or icecream and did not have any
problems sticking to this for the three months. We got used
to taking a measuring jug with us wherever we went.
Again we marvelled at Tony’s pink (compared to their
previous shade of purple) lips and fingernails and the way
that he could run around without getting so tired. Surely we
could stop worrying for a while now.
HeartKids Victoria - Spring 007 Page 11

Tony’s Story continued from page 9
Tony in iCu after the 2nd stage of the fontan
Of course as any parent knows, worrying and parenting
seem to go together, but life was fairly uneventful and Tony
finished kinder and started Prep. People asked us, “Are
you sad that he’s going to school?” Our answer to that was
that we were excited for him and just glad that he was alive
and able to go to school.
Tony loved primary school and had a wonderful group of
friends who looked after him by inventing chasing games
where he was stationed behind a tree to catch the people
that they chased towards him so that he didn’t have to run,
and offering to skip for him in the Skipathon.
Once again, when he was in Grade 2, Tony gradually
started to get blue and breathless due to the size of the
fenestration, so after an exercise test where his saturations
dropped to the 50’s, it was decided the fenestration now
needed to be closed which could be done with a cardiac
catheter. This procedure went well and once again we had
a boy with beautiful pink lips and fingernails.
Since this procedure in 2002, Tony has been in excellent
health and is just like all the other kids. He is still on daily
Aspirin as we volunteered him to take part in a study
comparing the effects of Warfarin and Aspirin and he was
put on Aspirin. He has started at Whitefriars this year and
is loving life as a Year 7 boy and playing basketball and
cricket at the moment.
Tony is now just one of the boys, (with a few scars) and
we only visit his Cardiologist Dr. Wilkinson every twelve
months. It is still a nerve wracking experience when we
go for check-ups. Even though we know that he is really
healthy we breathe a big sigh of relief when Dr. Wilkinson
confirms that Tony looks fantastic and everything is going
well.
Having a child with major heart problems has caused us
many tears and sleepless nights but most importantly it
has made us really appreciate how lucky we are to have
a beautiful healthy son who brings great joy to our lives.
Scott and I never take it for granted that Tony is able to
play sport with his mates as we can vividly remember him
being blue and breathless (even though he says he has no
memory of this).
It has been a life changing experience for us to go through
what we have as parents of a Heartkid but it has made us
better people who are eternally grateful to the wonderful
staff at RCH and to our family, friends and HeartKids who
have also supported us. At times it has been unbelievably
hard, but it has all been so worthwhile and we feel very
fortunate to have such a happy and healthy teenage son.
Written by Tony’s mum, Peta
We welcome contributions to the newsletter and invite you to
send in stories, high resolution photos, and any other ideas.....
The Child Stories are the favourite segment of the
newsletter for many people. Have you thought of writing
your child’s story, and would you like to share it with
other newsletter readers? You could write a 2-page story
(about 1700 words), or you may prefer to write a shorter
piece, or focus on just one aspect, for example, siblings,
or starting school .......
Health Care Cards for 16 year olds
As of the 1st October 2007 all children that are currently
on a Carer’s Allowance Health Care Card are entitled
to a Health Care Card from when they turn 16 years
old. This is great news for all those families who have
been wondering how they will be able to afford their
child’s medications once they turn 16 and lose their
Health Card Card.
The Qualification criteria is:
• A Carer’s Allowance Health Care Card, in the name of
the child, must have been current on the day before the
child turned 16, and
• The child must be a full time student, and
• The child must be aged 16 - 25 years (i.e not turned
26)
The readers also love hearing of your child’s achievements
and any other news that we can celebrate with you! We
invite you to send in photos and news updates for the
Child ‘Celebration and Achievements’ page.
If you send us a newspaper cutting, include the date and
name of the paper, and please try not to fold it through a
photo. See page 2 for mail and email details.
Families will need to lodge a claim form (at this stage
the form is not available until 01.10.07 but will be able
to be printed off the Centrelink website after that date).
Claims can not be accepted before 01.10.07. Claims can
be lodged from when a Carer’s Allowance child is at the
age of 15yrs and 9 months. The card will be valid for 12
months, then reviewed and renewed. I.D is still required
with the claim.
If you have any queries regarding this, or if your child is
close to 16 years of age and is not the recipient of a Carer’s
Allowance Health Care Card then please contact either
Centrelink or your hospital Social Worker to discuss.
Leanne Foster – Team Leader – Cardiac Social Work
Team - Royal Children’s Hospital
Page 1 HeartKids Victoria - Spring 007

Jaiden’s Wish Came True.....
Member Anne Ronan is the proud Nan of HK Jaiden Hammond. She has written to tell
us about Jaiden having a wish granted by the Make A Wish Foundation.
After Jaiden turned 4 years old in December last year, his family filled in the Wish
application forms on his behalf. Some Make A Wish representatives visited Jaiden to
talk to him and be certain of the details of his wish. His wish was to have a holiday with
his family at the Gold Coast and visit the Theme Parks. They also asked him who his
heros were and he told them it was Spiderman, Batman and Nathan Buckley.
A couple of weeks later arrangements were made that Jaiden and his family would fly
to Queensland for their holiday, leaving on 23rd June.
They were asked to go to Melbourne Grammar School on 22nd June to collect the
tickets for Jaiden’s big adventure. The school was holding their annual Crop a Kid
Day where over 50 students and a few staff cropped their hair to raise money for
the Make A Wish Foundation. They wanted to meet the recipient child of this year’s
fundraising and arranged a special day for Jaiden, including the wonderful surprise of
AFL footballer Nathan Buckley coming to join in the fun. Also there for Jaiden were his
other heros, Batman and Superman (as Spiderman couldn’t make it).
At the presentation Nathan spoke first, saying he was honoured to be in Jaiden’s top
3 favourite people, and he gave Jaiden a signed Collingwood number ‘5’ jumper. The
Make A Wish Foundation presented Jaiden with his plane tickets, accomodation and
car hire, they gave gifts to Jaiden and his brother and sister, and then brought out a
huge Spiderman cake for Jaiden.
It was a fantastic day for Jaiden and his family, at the start of a memorable holiday. They
sincerely thank all the special people who helped make Jaiden’s wish come true!
Make-A-Wish foundation
All children with a life
threatening illness are able to
apply for a wish. HeartKids
would be pleased to assist
you in applying for a wish –
please contact Tracy Stanley
on 9513 9030 for further
information.
Photos clockwise from bottom left:
Nathan with Trent, Jaiden and
Shakayla; Jaiden and his family at
Melbourne grammar School; the
Spiderman cake; Nathan presenting the
Collingwood jumper; the super heros;
Jaiden driving at Movie World.
HeartKids Victoria - Spring 007 Page 13

family Support Report
The HeartKids family Support Team look forward to meeting you and hearing news
about your heart child and your family. Please remember that if you think we can help
you, ring us on the messagebank number (03 9513 9030) and we will call you back.
even ring us when your heart child is going well, as we also love to hear good news!
Hi everyone,
Lynette McCoullough
It is great to see so many new members joining the
HeartKids community and also great to see that many of
our members have recently renewed their membership.
This shows us that you value the work we do as an
organization, so thank you very much! Thank you also to
all who have included a donation with their membership
form, as your extra financial support helps immensely.
If you haven’t yet renewed your membership and would
like to continue as a member (and we hope you do!), then
please send back your renewal membership as soon as
you can, to help us complete our renewal program.
We would love to get to know as many of our members as
possible, so why not consider coming along to one of our
events or our regular coffee mornings, so that we have an
opportunity to get to know you and your family. If you live
out of the metro area, maybe ring your Branch Coordinator
so that they may get to know your family and join in a
coffee morning if there is one organised in your area. If
you live in an area where we do not have a coordinator,
then let me know. We may be able to establish a group in
your location.
Thank you to members who have sent a photo, or included
updates and news of your child’s progress – this is a great
way to keep in touch with us! We love hearing news about
our families.
This is an exciting time of year for us, where we will be
busy with a number of support events. We have a fun
day happening in each month this quarter, starting with our
Box Hill Miniature Train Day in October, followed by a fun
day out at Myuna Farm in November and capped off with
a fantastic Christmas Party in December. Please come
and say hello and introduce yourself if you come to any of
these days.
Hello to you all,
Tracy Stanley
I am thrilled to be staying on in the role of Family Support
Coordinator. I have thoroughly enjoyed the past year,
meeting so many gorgeous heartkids and their families
and it’s an absolute privilege to share your journeys and
all the emotions along the way. The noticeboard above my
desk is full of lovely photos of the beautiful children I have
met – it’s very inspiring to look up and see their faces.
I really love to catch up with families – so please let me
know (by email or phone call to our messageback) if you
are coming into the hospital for either surgery or a clinic
appointment. It’s especially nice to see the children at
clinic looking so well.
Lynette & I attended the HeartKids Australia Conference
in Adelaide, which was a great experience. HeartKids SA
did an amazing job organising the conference and were
great hosts. The Family Support Coordinators from all the
State HeartKids groups spent a couple of hours together
– it was a wonderful opportunity for us to meet and share
information. We identified some areas we would like to
develop and are currently working on some projects that will
improve the services we provide. By sharing information
and resources we will achieve more and it’s great to call
on other’s experience or areas of expertise. A portal has
been set up for us to communicate with each other and
we’ve since had a flurry of emails.
I’m very excited about our new Parent Precinct, which
is now open and in use. Our regular Thursday coffee
mornings are being held in the room which has improved
facilities, including a wonderful plasma tv! Please come
and join us – the coffee mornings start at 10:30 am. It’s
an opportunity to have a break from the ward and chat
to other families sharing a similar experience and enjoy
Tom’s famous sausage rolls!!
I look forward to seeing you or hearing from you,
Tracy Stanley
Lynette McCoullough
Support Administration Coordinator
Email: mccoullough@bigpond.com
Tel: (03) 9333 1586
Family Support Coordinator
Email: tracy@heartkids.org.au
Tel: 0417 569 733
Page 14 HeartKids Victoria - Spring 007

Social Work Matters
Hi everyone
as the team leader for the Social Work service to the cardiology Unit at the Royal children’s Hospital I will be
contributing an article to each Heartkids newsletter. the role of Social Work is to provide emotional and practical
support to patients and their family and each of these columns will address a different topic about these matters. If
there is a particular topic you would like me to cover please feel free to email me at: leanne.foster@rch.org.au
cheers, leanne Foster
Looking After yourself When your Child is in Hospital
Having a sick child in hospital is a stressful time and it
can be hard to juggle looking after yourself and being
there for your child. Self care is essential while your child
is in hospital. It will help you to carry on throughout the
hospitalisation period and to also be ready to return to
your normal life once your child is ready to go home.
Here are some tips that we have found to be useful for
parents:
nutrition
It is important for you to try to maintain a healthy diet
while you spend time in the hospital; this will keep up your
energy levels and help maintain your own health. It can be
hard to find healthy and affordable meals if you are away
from home or you cannot leave the hospital area. If you
are staying in Parent Accommodation you may be able
to get family or friends to help out by making meals that
you can freeze and bring over to the hospital. Remember
that the Family Resource Centre and the new Heartkids
Parent Room on 7W have facilities for heating meals.
It’s also important to keep hydrated - the wards can be
warm and tend to dry you out quicker than normal…and
remember, Melbourne tap water is good and free!
exercise
Make sure you get some basic exercise and fresh air.
This can help give you a break and often allows parents
time to think and have some “me time”. There are great
SUPPORT for FAMILIES of
CARDIAC PATIENTS at RCH
A representative of HeartKids Victoria will be visiting families each week in the Cardiac Ward,
and at outpatient clinics in 7 East & the Children’s Heart Clinic (on the 3rd Floor, Front Entry
Building). On request we can also visit parents when their child is in the Intensive Care Unit
or admitted to other wards in the hospital.
We will be there to have a chat, help you find answers to your questions,
locate information, put you in contact with other families if you wish and
try to make your stay at the Royal Children’s Hospital a little easier.
Referrals to the cardiac social worker can also be arranged.
Our usual Ward visits are now on Tuesdays and Thursdays.
parks around the hospital for walks or you can just take
the stairs when you leave the ward for anything!
Sleep
Sleep is both restive and restorative and has great
benefits for you physically and emotionally. Getting good
sleep, even if it is in shorter but more regular bursts, can
help you to maintain your energy but can also help you to
recover from those tough days.
Who is looking after you?
While you are busy looking after your child in hospital
who will be looking after you? It is important that you
have people around who can offer you support, both
emotional and practical. This may be having your partner
around so that you can support each other, a friend who
is a good listener, a parent, or accessing the supports
offered through the hospital such as the HeartKids Family
Support Team, ward Social Workers and the hospital
Chaplaincy service.
Balancing competing demands
It can be hard to juggle the needs of your child with those
of yourself and other family members. If you find yourself
having difficulty in this area then your Social Worker
can assist you. We can arrange Ward Grandparents or
Volunteers so your child has company while you attend
to other needs and we can help you to look at a variety of
different strategies to maintain this balance.
We also have a coffee morning from 10.30am-11.30am on Thursdays
for ward and outpatient families, now held in the new Parent Precinct on the 7th floor.
(To find the Coffee Morning turn left when leaving the 7th floor lift.)
for further information please phone us on (03) 9513 9030
and we will get back to you very soon.
HeartKids Victoria - Spring 007 Page 15

Branch & Coffee Morning Co-ordinators
Here is a list of our Victorian and interstate Branch Co-ordinators / Coffee Morning
Hostesses who are keen to support local families in their area.
Some hold Coffee Mornings regularly; some are happy to arrange a get-together when families
in the area make contact with them. A few dates are listed below for the coming months, but
please contact the hostess to RSVP & for updates in case the plans have changed.
RegioNAL
ViCToRiA
Horsham
Gaynor Baker
(03) 5384 2280
Stawell
Leanne Amarant
(03) 5358 2945
0419 864412
leanneamarant@
hotmail.com
Portland
Kerry Sluggett
(03) 5523 2503
0418312320
ksluggett@iinet.net.au
terang/Warrnambool
Melissa Cardwell
(03) 5592 2485
mcardwell@westvic.com.au
You are welcome to come along, enjoy a cuppa and chat with other HeartKids
families but please consider others if you or your family are unwell.
ARouNd
MeLBouRNe
Bendigo
Kate Nester
(03) 5449 3992
Ballarat
Meetings will be held
2nd thursday each month
Sonya Macdonald
on (03) 5332 3390
sojmac@bigpond.net.au
Geelong
Stacey McKiernan
(03) 5275 1542
dsmckiernan@
dodo.com.au
northern Suburbs of metro melbourne
To obtain details please contact Lynette on
(03) 9333 1586 or mccoullough@bigpond.com
Bayside
Meeting on the last Friday in october & november from
10am-12pm at Playdays, 247 Bay Road, Sandringham
Alison Wright (03) 9585 3558
mornington Peninsula
Jacquie (03) 5987 1031 larkinsj@hotmail.com
NoRTHeRN
TeRRiToRy
echuca/moama
Michelle Hall
on (03) 5482 2109
five.halls@bigpond.com
Goulburn Valley
Cheryl Alexander
(03) 5825 4005
calex@mcmedia.com.au
latrobe Valley
Sophie Werner
(03) 5195 5453
sophia.werner@bigpond.com
South Gippsland
Kerrie Disney
(03) 5186 1331
urme2@tpg.com.au
darwin, northen territory
Monique Grubb (08) 8932 7958
Sonya Pryce (08) 8981 7574
pryce@tpg.com.au
albury/Wodonga
Paula Ebert
(02) 6056 7525
0407 106 045
paula_ebert@hotmail.com
Wangaratta/Beechworth
Ros & Geoff Clark
(03) 5728 1958
TASMANiA
launceston
Next meeting Sunday 28th october at
119 South Esk Drive, Hadspen, from
2-4pm. Please bring a plate to share.
Kylie Smith xbfan@bigpond.com
or on (03) 6393 6240
Hobart
Melissa Bannister
on (03) 6274 1481
0405 050 718
lissajb@tasmail.com
cranbourne/Berwick/narre-Warren
We are meeting at 9.30am on Wednesdays
24th october 21st november
19th december 23rd January
Playhouse Cranbourne (indoor sports centre)
14 Smethurst St, Cranbourne
To RSVP or for more details please contact
Sandra on (03) 9704 1901 or on 0438 077 002
melbourne outer east
Next Coffee morning will be Wednesday 10th october
from 10am to 12 noon at Play Days Knox
Indoor Play Centre,108 Lewis Street, Wantirna Sth
For more information about november to January
please contact Lauren (03) 8790 4414, 0419 515 546
or danloz@bigpond.com to RSVP
Page 16 HeartKids Victoria - Spring 007

Branch News - introducing Cheryl Alexander
Hi, My name is Cheryl
Alexander and I am the
contact for Heartkids
in the Goulburn Valley
area. We live in
Mooroopna.
Our Heartkid, Jayden is
9 1/2 years old and we
have 2 healthy children,
Cheryl Alexander with Jayden Ebony (6) and Brodie
(2) My husband John
works as a baker in Tatura. Our other family members
include: Jesse the Blue Heeler, Geddy the Mexican
Walking Fish, Pauli the Australian King Parrot, Warko the
Cockatoo and about 30 love birds.
Jayden’s heart condition is Hypoplastic Left Heart
Syndrome which was detected after birth on day 2 when
he became very breathless, grey and had trouble feeding.
He was flown to Melbourne and had his 1st open heart
surgery on day 5. His 2nd surgery was at 4 months, 3rd at
14 months and 4th when 8 1/2 years old.
Jayden attends Ardmona Primary School which has only
38 students. His heart condition played a major part in
choosing a smaller school. It is a decision we did not take
lightly and one we have no regrets in making. We are all
very involved as John is School Council President and I
am Parents and Friends President. It keeps us all busy.
The school “family” have also been fantastic. The Principal,
Teachers, Aides, other students and their parents are all
aware of his condition and have been very accepting.
Kiwanis donation for
Cardiac Research
HK Jayden Alexander,
pictured here with his
mum Cheryl, accepted
the cheque which was
donated to HeartKids at
the Kiwanis international
Australia district
Annual Convention in
Shepparton in August
HeartKids Patron
Ted Kitto was
delighted to present
a cheque representing
this year’s Kiwanis
donation towards
cardiac research
Jayden also likes to swim, ride his bike and go camping
like all little boys do. His passion is animals and anything
associated with them. He has had 100’s of toy animals and
spends hours making zoos, pets, RSPCA, safaris, etc.
Over Jayden’s hospital stays we have had great support
from HeartKids. I always feel good to be able to give that
support to others as well. I think we all need it.
Each year I am thrilled to be able to help Division 7 Kiwanis
in organising a Family Fun Day for Heartkids and their
families. The last few years have seen this day grow in
size and everyone has a great time.This year we even got
the weather right! We look forward to seeing many of you
there next year. It is great that we have such support from
Kiwanis.
I am sorry for what Jayden has had to endure so much
already in his life, but we have made many friends due to
this. We have learnt to never take anything for granted and
to be grateful that every day is a blessing. You never know
what is around the corner.
If you live in the Goulbourn Valley district, please give me
a ring and introduce yourself. I would love to hear from
you. You can contact me on (03) 5825 4005 or email me
on calex@mcmedia.com.au. I am happy to organise a
coffee morning if we have a few families interested, so
when you ring, please let me know if you are interested in
getting together to meet other families.
Thank you all for sharing this part of our life.
Best wishes to everyone , Cheryl Alexander
eNd of yeAR CeLeBRATioNS
The following interstate/country branches are planning
to hold a Christmas party near the end of the year.
if your family would like to be involved,
please contact your Branch Coordinator to show
your interest in attending.
Albury/Wodonga
Bowling day, Sunday 18th November
Paula Ebert, 02 60567525 or 0407106045
or paula_ebert@hotmail.com
Hobart, Tasmania
Contact Melissa Bannister (03) 6 74 1481 or
0405 050 718 or lissajb@tasmail.com
Launceston, Tasmania
A Christmas Party will be held on 9th December
from 11 am till 3pm in the Jean Marshall Wing, at
the Kings Meadows Community Health Centre.
BBQ lunch and nibbles and games etc
For more details: contact Kylie Smith
on (03) 6393 6240 or xbfan@bigpond.com
HeartKids has been registered as a member of a
Tasmanian organisation, called “Special Children”.
They are holding their Special Children’s Christmas
Party at the Derwent Entertainment Centre, Hobart
on 16th December. For details and tickets contact
Kylie Smith, (03) 6393 6240 or xbfan@bigpond.com
HeartKids Victoria - Spring 007 Page 17

Birthday greetings
1st Birthday
Liam Thompson
Hannah Thomson
Callum McCarthy
Harvey Ellis
Thomas Federico
Abby Johnson
Kabir Mahanty
Toni Smith
2nd Birthday
Mia Cowley
Brendan Wright
Riley Hall
Saxon Godwill
Sabatine Butarbutar
Cooper Rosevear
Tanner Agnoleto
Bradley McConachy
Charlie Ewens
Kiara Ward
3rd Birthday
Lachlan Richter
Samuel Rosson
Honor Jaques
Charlotte Slattery
Natalie Tisi
Darcy George
1st Birthday
Matthew Lichtenstein
Eliza Scott
Jessica Crea
Heather Crisp
Ella West
2nd Birthday
Antigone Sullivan
Shakayla Hammond
Ruby Dugdale
3rd Birthday
Tarrant Agnoleto
Danny Sweeney
Alexander Chung
Tim Land
Joel Morrison
4th Birthday
Brianna Chick
Natalie Geytenbeek
Tane Bailey
Beau De-jong
Brody Godwill
5th Birthday
Patrick O’Keefe
Benjamin Ewens
Matthew Cogger
Eliqa Pryce
HeARTKidS...
4th Birthday
Hamish Nelson
Jack Irani
Lucy Sherriff
Auren O’Connorlamb
Rohan Daldy
Abbey Pengilly
Finn Zanoni
Caitlin Johnson
Thomas Stafford
5th Birthday
Benjamin Wahib
Jordan Corso
Chloe Miller
Sophie Ebert
Harry Wheeler
6th Birthday
Ethan Sartor
Joshua Frank
Matthew Leening
Noah Thorley
Kahli Anquetil
Joseph Ovari
Erin Porter
Nathan Smith
BRoTHeRS ANd SiSTeRS...
6th Birthday
Mekaela Hopson
Erin Porter
Connor Cardwell
Shae Rohan
7th Birthday
Aaron Susan
Jasmyn McDonald
Ella Kingston
Jordan Holmes
Hayley Livingstone
Joshua Belani
Morgan Chick
8th Birthday
Kathryn Moran
Olivia Howell
9th Birthday
Aidan Howard
Thomas Saunders
Riley McKiernan
Montana Hardinge
Douglas Langford
7th Birthday
Corey Lake
Celeste Basile
Sebastian Brook
James Crisp
Annmarie Tripodi
8th Birthday
Caleb Jones
Cara McKinnon
Tiarna Grasby
Noah Woodhouse
Avelynn Wood
Thomas Goodfellow
9th Birthday
Jessica Roff
Taylah Cogger
James Morrow
Lachlan McBean
Thomas Frawley
10th Birthday
Isabella Vidotto
Jacob Kingston
Richard Smart
Amy Hodge
Dion Chris
10th Birthday
Tom Collins
Laura McCoullough
Thomas Arrowsmith
Connor Cull
Liam dela Fuente
Chloe Belani
Todd Nester
Stephanie Chris
11th Birthday
Christopher Wilson-Hawe
Pierce Watkins
Joshua Elliott
Liam Whelan
Sophia Petras
Olivia McFadyen
11th Birthday
Zeke Beckley
Emma Blyth
Jayne Richards
Flynne Tytherleigh
Taylah Johnson
Tyson Rufus
Tommy Bell
12th Birthday
Karl O’Donnell
Paige Berry
Sebastian Lonigro
Leah Askey-Doran
Jessica Godenzi/Disney
13th Birthday
Jack Belsar
Morgan Dummett
Lauren Sexton
14th Birthday
Jessica Curgenven
Daniel Paxton
Madelaine Marsolino
Gideon Lim
Jeffrey Wilson-Hawe
15th Birthday
Rosalind McFadyen
Phillip Gourkov
Kristoffer Hoen
12th Birthday
Joshua McKee
Damaris Keath-
Watts
13th Birthday
Georgia Girschik
Tiana Bell
Eathon White
Carly Harbord
14th Birthday
Hannah Whelan
15th Birthday
Matthew Taylor
Rachel Scane
August
september
OctOber
16th Birthday
Jessica Kassimiotis
Theo Kliousis
Charlotte Malon
Chloe Girschik
Stefanie Falasca
Caitlin Porter
17th Birthday
Hannah Flack
Bethany Milkins
18th Birthday
Correna White
Michael Faulks
Bianca Zampin
Brad Russell
Jessie Clark
Tahnee Williams
19th Birthday
Adam Davison
Daniel Sofoulis
Scott Richardson
Jemima Milkins
20th Birthday
Kelli Densten
21st Birthday
Christopher Coxall-Adams
Nicole Sluggett
Lauren Patullo
16th Birthday
Matt Livingstone
17th Birthday
Stephanie Carey
Leah Davison
Kathryn Inkster
18th Birthday
Lachlan Girschik
James Faulks
21st Birthday
Laura Russell
Birthday greetings to Siblings
As we are a family support group, we would like to celebrate
more birthdays of siblings on this page in future
editions.
If your family would like to participate, please send us
details of siblings to age 21 (first name, surname & date of
birth) so we can be sure we have accurate records.
Page 18 HeartKids Victoria - Spring 007

Personal greetings
WelcOme tO All neW
HeArtKids members
Thomson family with HK Hannah
Bev Petch, Nana to HK Macauly Baker
Douglas / Schulze family with HK Thomas
Howell family with HK Harry
Mustafa family with HK Sibell
Curgenven family with HK Jessica
Rofael family with HK Christian
Versace/ Mazzei family with HK Mia
Khemka family with HK Yajur
Mahanty family with HK Kabir
Meg O’Callaghan cousin to HK Lachie O’Callaghan
Graham / Burgess family with HK Charley
Hawkins family with HK Talisha
Schirmer family with HK Stephanie
Clifton family with HK Michaela
Joanne Harbridge, Grandmother
to HK Charlie Ewens
Edward Waters
Shameema Damree
Heather Smyth
Helena Taylor
Hazel Janson
Phil Riggio
We also remember
the birth date
of Heart angels:
Bryce Ibbs
7/10/1989
Kristen Potts
10/08/1997
Matthew Moran
0/10/ 004
In Hospital
A special hello to all our HeartKids
who have been in hospital for surgery
or tests in the last 3 months.
our thoughts and best wishes for
speedy recoveries are with you all!
Bethany Milkins
Charlie Saunders
Chloe girschik
ethan Hanley
Hannah Thompson
Jack Turner
Jai Barnard
Kiara Ward
Jasmine Nazaretian
Joseph ovari
Josh frank
Josh Harper
Kabir Mahanty
Kristoffer Hoen
Leah Askey-doran
Mia Crosswell
Nate Kreeck
Talisha Hawkins
yajur Khemka
Charley graham
Chayce Howe
Aimee oldman
NeW ARRiVAL
Our Congratulations to the Pickett
family who have recently welcomed new Baby
Elijah. He was born on 18th July and is a
brother to HK Ruby
Our best wishes to you all
antIcIPated HoSPItal VISIt
As we endeavour to visit and/or phone you when
your child is hospitalised, we’d love to hear from you
when a hospital stay is scheduled.
To keep us up-to-date you can mail this slip,
phone on (03) 9513 9030 or
email a message to heartkids@heartkids.org.au
cHIld’S name: ............................................................................
PHone nUmBeR: .........................................................................
eXPected date oF admISSIon:.................................................
ReaSon FoR admISSIon: [ ] tests [ ] Surgery [ ] other
eXPected lenGtH oF StaY: [ ] less than 1week [ ] 1week or more
Please send details to:
HeartKids Victoria,
C/o Cardiology Department, Royal Children’s Hospital,
Flemington Road, Parkville Vic 3052
HeartKids Victoria - Spring 007 Page 19

Kids Page - Spring
Spring Suduko
There are 6 Spring symbols in this game.
How to Play Suduko:
Add symbols to the grid so that
- Each row contains each symbol
- Each column contains each symbol
Now you can make your own games!!
A spring Butterfly to colour in
Page 0 HeartKids Victoria - Spring 007

” The make Cover. a kite. The paper, plastic, or
cloth
cloth
that
that
covers
covers
the
the
frame
frame
to
to
make
make
a
a
kite.
kite.
Kids Page - Here’s an Easy Kite to Make
The Bumble Bee
You will need for each kite:
The The Bumble Bee Bee
You ” will Sheet need of for paper each (you kite: can use
You will recycled need for newspaper, each kite: tabloid size
” Sheet are Sheet the of
of best); paper
paper
(you
(you
can
can
use
use
” recycled sewing recycled thread. newspaper,
newspaper,
tabloid
tabloid
size
size
are
are the best);
is best; the even best); a4 paper works well)
You ” will sewing
sewing need for thread.
thread. each group:
You ” will Stapler
You will need
need for
for each
each group:
group:
” Hole punch.
” Stapler
Stapler
Now ” let's Hole
Hole begin... punch.
punch.
1.
Now
Fold
let's
the sheet
Now let's begin... begin...
of paper in half...
Now let's begin...
2.
1. 1.
Mark
Fold Fold the the
two
sheet sheet
points,
of of
A
paper paper
and B
in in
on
half... half...
the folded edge
1. Fold of the the paper. sheet Point of paper "A" should in half... be 2.5 inches
2.
2. Mark from Mark the two
two end, points,
points, and A point A and
and B "B", B on
on 3.5 the
the inches. folded
folded edge
edge
of of the the paper. paper. Point Point "A" "A" should should be be 2.5 2.5 inches inches
3. of Fold the
from from
the paper.
the the
top
end, end,
corners Point "A"
and and point point
of should the
"B", "B",
page be 2.5
3.5 3.5
to
inches. inches.
point inchesA
from and staple the end, them and in point place. "B", Do not 3.5 inches. crease the
3.
3. Fold paper. Fold the
the Just top
top bend corners
corners it back. of
of the
the page
page to
to point
point A
A
and and staple staple them them in in place. place. Do Do not not crease crease the the
4. and Punch staple
paper. paper.
a
Just Just
hole them
bend bend
at in point place.
it it back. back.
B and Do not attach crease yourthe
paper. flying Just thread. bend it back.
4.
4. Punch Punch a a hole hole at at point point B B and and attach attach your your
5. Punch That's It’s ready a
flying flying
all!! hole to at fly!! point This B kite and even attach flies your when
flying thread.
thread.
there is no wind, if you run along with it.
5.
5. That's
That's all!!
all!!
Name games
Thanks to Member Julie Hawkins,
mother of HK Talisha, for sending in
this word poem about being a Heartkid.
H......Happy..........
e.......eager..........
A......Annoyed........
R.......Restricted.....
T......Talented.......
K.......Kind............
i.......intense........
d......determined....
S.......Survivors......
Do not fear the winds of adversity. Remember:
A kite rises against the wind rather than with it.
Author unknown
wind your flying line, to keep it
form
form
getting
getting
tangled
tangled
or
or
flying
flying
away.
away.
Fold and
crease
only
Fold
half
and
Fold and
crease
crease
only half
only half
Fold
Fold
Fold
Fold
corners Staple
and
Fold
staple
Fold at
corners
point A Staple
corners Staple
and staple
and staple
at point A
at point A
‘let’s Go Fly a Kite ‘ (from mary Poppins)
http://kids.niehs.nih.gov/lyrics/flyakite.htm
Written by Robert B. Sherman
With tuppence for paper and strings,
you can have your own set of wings.
With your feet on the ground,
you’re a bird in flight!
With your fist holding tight,
to the string of your kite!
Let’s go fly a kite
Up to the highest height
Let’s go fly a kite
And send it soaring
Up through the atmosphere
Up where the air is clear
Oh, let’s go fly a kite!
When you send it flying up there,
all at once your lighter than air!
You can dance on the breeze,
over ‘ouses and trees!
With your fist ‘olding tight,
to the string your kite!
Let’s go fly a kite
Up to the highest height
Let’s go fly a kite
And send it soaring
Up through the atmosphere
Up where the air is clear
Oh, let’s go fly a kite!
B A
B A
Mark A and B
3.5”
2.5”
3.5”
2.5”
0
0
Mark A and B
Mark A and B
Punch hole B
B
at B and tie line
Punch hole
Punch hole
at B and tie line
at B and tie line
http://www.developmenteducation.ie/
resources/how_to_make_your_kite.pdf
HeartKids Victoria - Spring 007 Page 1
B A
3.5”
2.5”
B
0

Courageous Kristen
the Story of Heart angel Kristen Potts
Written by Wendy Potts (her mother)
I wanted to share the story of my daughter Kristen Potts, as
I have always felt that her medical condition is so different
to the experiences of many others with Heart conditions.
So many Heart kids start their relationship with the Royal
Children’s Hospital as newborns or little babies. Primary
Pulmonary Hypertension (PPH) is different. It can just
pop-up from nowhere and there is nothing wrong with the
“plumbing”. No operation can change the condition, and for
some, no medication can completely stop its progression.
Primary (or unexplained) Pulmonary Hypertension
(PPH) is a rare lung disorder in which the blood pressure
in the pulmonary artery rises far above normal levels (for
no apparent reason). This increases resistance to blood
flowing through the vessels and puts a strain on the heart.
In laymen’s terms, the lungs are “different” making it a
lot harder work for the heart to do its usual job. PPH is
so rare and so different for so many patients (adults and
children) that the low incidence makes learning more
about the disease extremely difficult. Thankfully the RCH is
considered a centre of excellence in our part of the globe.
How blessed we were then, to live only 25 minutes from
the centre of Melbourne.
diagnosis and disbelief
Kristen was, as we thought, perfectly healthy for the first
6.5 years of her life. Possibly she was for most of that time,
as we have no way of knowing if it was something she
was born with or something that developed only a year or
two before diagnosis. In April 2004, we had a call from the
school one morning to say that Kristen had fainted and
was unwell. I left it to my husband who worked from home
to collect her and check things out. After all it sounded
like a dose of gastro or something. My husband John
was suspicious and took Kristen to our local GP. Between
them they decided she should have an ECG and we were
extremely lucky that someone knew what they were doing
that day. We ended up with a referral to Dr. Sam Menahem
(our first paediatric cardiologist).
PPH often goes undiagnosed for some time, as the
symptoms are simple and can be confused with other
illnesses (fatigue or tiredness, difficulty in breathing,
dizziness and even fainting spells, bluish discoloration of
the lips and skin, and chest pain more often occur later in
the disease). Kristen had nothing but this fainting spell.
Surely this was all overkill and we would be sent away
being told we were silly. Or at worst we would be told she
needed a heart operation. No, it was likely Kristen had
PPH. But she would need to have a number of tests locally
to eliminate other possible causes, followed by going into
the RCH for some tests as an inpatient to check out her
lung pressures with a cardiac catheter. Our first time under
anaesthetic.
In June 2004 it was confirmed. The bad news - Your child
has PPH. The good news – she has been diagnosed early
in its development so this would give her the best possible
outcome.
How can this be? She looks, and was back behaving,
like any other child nearly 7 years old. We started the first
Our first stay at RCH at diagnosis (June 2004)
medications, thankfully oral, although taking tablets would
be another challenge. Some information available about
PPH was dire and destructive but with the help of our new
Cardiologists (Dr Robert Weintraub and Prof. Dan Penny)
we were soon better educated and comforted with the
fact that these specialists knew what they were doing. A
few years earlier and these drugs would not have been
available in Australia (something else to be thankful for).
In a time where you often asked yourself “why us, why
Kristen, why this condition”, you had to find SOMETHING
to be thankful for. Or that was my positive spin on things.
Kristen’s first experiences with needles and blood tests
showed her to be very brave. She was put on Warfarin (a
blood thinner) and needed regular INR tests which could
be done via a thumb-prick at the RCH. At her first INR
there was hysteria and I wasn’t looking forward to more of
these. The funny thing was that as visits continued, the INR
was a piece of cake, but Kristen became needle-phobic
for any other form of blood-test, vaccination, flu shot or
IV. (My definition of needle-phobic - where the stress of
just getting an IV in or out of your arm is much greater
than an operation and its risks.) The drive into the RCH
was worth it every 2-4 weeks to have a thumb prick (rather
than a full-needle blood test), even though we lived just 5
minutes from Monash Hospital. And the Pathology nurses
at the RCH would become great friends to Kristen over the
years.
We would come back for another cardiac catheter and few
days stay in November 2004 which was routine to check
how the medication was affecting her lung pressures. There
Page HeartKids Victoria - Spring 007

had been no change, which wasn’t news to celebrate, but
with a medical condition that is progressive, it wasn’t the
worst possible news either.
Plateaus and cliffs
In life, and in many illnesses, we often think about the
Mountains and Valleys. The hard part hits you and you are
faced with a huge mountain to climb which seems possibly
endless. You battle up the
hill to enjoy the slide down
the other side, (a period of
stability). Kristen wasn’t very
typical with her illness and its
possible symptoms. If I had
to describe it, it was more
like this lengthy period on a
plateau (a period, anything
up to a year, where we
would even get somewhat
complacent as Kristen would
seem so well), and then she
would just “dive” off a cliff
one day (metaphorically
speaking) and we were
reminded that she DID
have a chronic illness.
These “dives” manifested
as a fainting episode. And it
would be a few years before I would ever witness one as
they always happened at school where increased aerobic
activity, partnered with some anxiety or fear, would cause
her to faint.
In August 2005 Kristen had her first “dive” after diagnosis.
Doing “star jumps” was apparently the worst possible
activity Kristen could do, but at least this time Kristen could
feel it all happening and could warn her teacher that she
didn’t feel right and the teacher and Kristen were more
prepared.
In November 2005 another near faint, in what should
have been regular school play, was more concerning and
sent off alarm bells for both us and her doctors. She had
been so well another cardiac catheter had only seemed
intrusive, but now it was imperative. Just 2 weeks before
Christmas she had the catheter and we knew we were well
and truly “diving over another cliff”. The oral medication
wasn’t doing a good enough job. Her lung pressures were
high enough to be worried and we would need to look
at the next stage: continuous intravenous Prostacyclin
delivered by a portable, battery-operated infusion pump.
The IV line would be put in her chest (after an initial period
in her arm whilst she grew accustomed to the medication).
We could do this early January or early February 2006.
This treatment was permanent, and would mean the end
of swimming as the gauze around the line, and the pump,
could not get wet. How do you tell an 8 year old that this
is likely their last Summer of swimming? We waited until
early February and had the most trips we could to the local
pool those school holidays. Kristen told me that “it sucked”
that she wasn’t going to be able to swim any more. But we
talked about what other activities we could do and share,
and how we could still enjoy the holidays. She continued
to be brave.
Next challenge: How do you tell a needle-phobic child they
are to have a “long-line” inserted in their arm (from elbow
Kristen with Shari after sharing the experience of
getting the “long-line” in her arm (feb 2006)
to arm-pit), all whilst you are “sort-of AWAKE”. Even I was
terrified. With the amazing assistance of Shari the play
therapist on 7 West, Kristen gained the skills to visualise
“happy things” and “nice places” whilst her procedure
occurred. With Shari by her side in theatre, Kristen had the
line inserted half-way up one arm (removed as it got stuck),
then up the other, all with only a few tears. An amazing
result by all accounts. Shari always had a soft spot in all
our hearts after that.
With Kristen’s pump in one
of the many little backpacks
that she co-ordinated with her
wardrobe, life on prostacyclin
wasn’t so bad. She had
increased aerobic activity
that she hadn’t had, and she
courageously continued with
her ballet and dance lessons.
Having the line was not a
struggle for Kristen, even
with giving up swimming. It
was the occasional curiosity,
misdirected as taunting,
from some older students
at school that troubled her
more. Why do you wear a bag
all the time? I’ve heard your
heart doesn’t work? It was a challenge to know whether
to respect Kristen’s need for some privacy or educate
the whole school about her condition. Her fellow grade 3
students were very protective of her, and as casual about
her bag and line as she was. She could even do a handstand
with her bag on the floor, much to the cringing of her
mother! Although life was different, we had a whole year
where things seemed somewhat stable.
Prostacyclin was also a life-changing experience for
myself and husband John too. One of us now had to be
within 20 minutes of Kristen at all times, to monitor or alter
her pump if it alarmed. Which rarely, rarely happened I
might add, but was high risk to Kristen if the pump was
stopped for any period much longer than that. One of us
also had to prepare her medication every night at the same
time. A process which took anything from 30-50 minutes,
(we got quicker as we were more practiced), with sterile
conditions.
March 2007 we had another “dive”. But given it was
associated with a fall on her scooter (without helmet
– grrrrr!) with a faint a few minutes later whilst she was
crying and telling me how much her graze hurt, I tried to
tell myself this wasn’t really a “dive”. Just something she
shouldn’t have been doing. We had an ambulance ride
into RCH to get everything checked, but she was smiling
and happy by the time we got there. A month later in the
school holidays Kristen was sleeping 13-14 hours a night.
It sort of seemed strange, but I put it down to being busy,
and figured it would be right once she got back to school.
Kristen managed 5 days at school that first week, but it
would be her last full week. She was severely lacking in
energy. The following week we had a heart-clinic check so
we waited to see the doctors then.
opportunity and optimism
On April 24th, a birthday of mine that I will NEVER forget,
but for all the wrong reasons, we were told that Kristen
HeartKids Victoria - Spring 007 Page 3

would need a lung-transplant. Neither of us could believe
it. Lung transplantation was always something that was
“way out there” in the distance. Something you turn to
when there are no other options. We had always been told
that survival rates were much better on the PPH protocols
of drugs. Transplantation would remove the disease (PPH)
but bring with it a whole new world of challenges. It took
me 3 weeks before this usually optimistic person could
face the lung-transplant option as something positive. I
finally realised that this could be an opportunity to start
afresh even though it would
be a tough road to travel.
We were then prepared by
our doctors, to deal with
a new hospital as lungtransplants
are done at the
Alfred. Meanwhile Kristen
began to retain fluid and get
more tired. She managed
school for a few hours one
day a week. Thankfully I had
a home-based business so
could work around caring
for Kristen. Kristen enjoyed
being with me whatever I
was doing, as long as she
didn’t have to walk too far.
On June 8th, six weeks
after being told she needed
a transplant, Kristen was
officially listed. By this stage Kristen was very lethargic and
lacking in energy, but able to walk short distances. The
operation would need to be a Heart and Lung package,
as her heart was now so big it would be way too complex
to separate the two. She still had plenty of spirit, and
we spent many hours on the couch together, not always
saying much, but occasionally talking about the prospect
of a transplant. When I asked her how she felt about it,
she told me… ”I want it, but I don’t”. She understood that
she would no longer have PPH, but she also knew that the
transplant was a big operation with a long recovery. That
was her way of saying…I am scared.
We took home a wheel chair that week for big trips to
Chadstone, a weekly trip to get us out of the four walls
at home. Mentally I was preparing for the long-haul. But
things moved so fast in the next 2 weeks that we quickly
had to gear up at home with equipment to help us. First the
oxygen concentrator, which started as a nightly exercise
to give her a little extra strength, but within days became
mandatory 24 hours a day. The wheelchair went from
being a novelty outdoors, to being a necessity to get from
the bedroom to the bathroom and lounge. I was now a
nurse 24x7 and had been sleeping with Kristen in a double
bed for a month anyway.
wasted away with no exercise and movement. When she
became nauseous we knew we had to adjust medications
and grab for something different or stronger.
Hospital and Hope
Kristen with one of the RCH Clown doctors after getting
her Prostacyclin line (feb 2006)
By July 16th we were in a bad downward spiral and there
were no more medications to be taken orally. John had quit
work a few days before as Kristen needed turning every 2
hours, but now we could no longer manage at home even
with two of us. Kristen even admitted it would be easier to
wait at the hospital for her transplant. “Then if they put an
IV in, I can use the same one
for my transplant”. Always
brave, always thinking… but
only worrying about that IV.
The next day we admitted
her to 7W with great relief
for us all. Whilst I knew we
had a minimum stay of 3
weeks for the next medical
protocol, realistically I knew
we would not come home
without a transplant. Forever
the optimist, I was ready
to move in for months…
because that transplant
would happen. I wondered
what we would be doing on
August 10th – Kristen’s 10th
birthday!
Kristen’s excitement each
day was what would be on the menu on ward. She wasn’t
eating heaps, but she looked forward to picking her meals
– something that was in her control. The next question was,
“Who is looking after our room?” as the nurses changed
each shift. All the nurses are wonderful on 7W but Kristen
still had her favourites, as did I. The new medication helped
to give Kristen back some color and a blood transfusion
gave her a slight increase in energy for a day, but then she
was going down-hill again.
After 4 days Kristen already hated the 4 walls of her room
and couldn’t wait for more visitors on the weekend. On
Sat 21st July an upgrade to the “special BIG room” on 7W
helped my sanity, but not really hers. A kind nurse organised
for Kristen to get out of the ward for an hour at the café
when a friend from school visited. (Even though it required
3 of us to wheel the chair with Kristen, the oxygen, and the
IV pole down there). Kristen was completely exhausted
when she got back, and she only sat and listened to us all
chat. But it had made a little girl very happy for an hour.
Sunday was not a good night and I struggled with every
hour until about 2am. I just kept saying, “This is just a bad
night. We will have bad nights. But we will get through this”.
Unfortunately, this was not just another bad night.
The only time Kristen complained is when her fluid retention
started to affect her appetite and nausea followed. About
every few weeks the diuretics wouldn’t be strong enough
and things would spiral out of control. But it was a fine
balance to maintain health in her kidneys, and balance
potassium and other levels whilst on the diuretics. Yet she
needed these so desperately to remove the fluid which
now was about 4-6 extra kilos on a small body that was
normally only 29kg anyway. And a few kilos of that had
Monday we got “the talk”. You know, the one where all the
medical staff come into the interview room with you, and
you hold your breath …and the words coming out of the
doctor’s mouth sound like they are in slow motion after the
first few sentences…. We could opt for CPAP (Continuous
Positive Airway Pressure - a more pressurised form of
oxygen), but this might mean ICU (Intensive Care Unit).
And the likelihood was that she could continue downward
spiraling and need intubating. We had talked about this
earlier. Intubation and ventilation would mean she would
Page 4 HeartKids Victoria - Spring 007

The Smile that Kristen was well loved for
(November 2006)
be taken off the transplant list. Not much hope after that.
And our little girl had been poked and prodded enough. As
gut-wrenching as it was, it was an easy decision to ensure
she was comfortable for the rest of her time and relieve
any discomfort with medication.
We continued the day with family and friends coming and
going in 2’s and 3’s. Kristen didn’t say much that day.
But she knew that we were all there, and could even still
be cheeky. Mid-morning whilst giving her a cuddle she
motioned me away with her finger. I asked her what was
wrong. She told me I had bad breath. I had to laugh. She
still had her little character, even with barely enough energy
‘BRAVE HEARTS CROP’
Creative Memories Workshop
A fundraiser in Memory of Kristen Potts
Kristen’s family invite you to come along and work on your
photo albums, or learn the art of Memory Album Making
and help them raise funds for research into Primary
Pulmonary Hypertension, in memory of Kristen.
(Proceeds will be donated to Royal Children’s Hospital
specifically for this cause.)
10% of sales and orders on the day go to the fundraiser.
details: 9.30am till 5pm on Sunday 18th November
Venue: Village Green Hotel in Brandon Park
Cost: $40 for the day includes buffet lunch and more...
RSVP: by Friday October 26th with registration fee
If you would love to help but cannot attend for the day,
you can join them at the same venue for an ‘Open House’
(Shopping Opportunity) between 1pm and 4pm.
For more details contact Wendy Potts (03) 9557 6819
or mobile 0414 450 862 or pottswl@yahoo.co.uk
to breathe. Over the last month she had spent many hours
sitting straddled on my knee as it was a comforting position
for her enlarged torso. She would just say to me… “I need
a Hug”. Late that afternoon, not having sat up in bed for at
least 24 hours, she asked to sit on the side of the bed. She
wanted another Hug. I will treasure that Hug forever. With
my back killing me as I bent to meet her level, I held that
hug for as long as she wanted to… nearly half-an-hour.
She wouldn’t sit up again.
It was Monday July 23rd, and I was sure she would hang
in there past midnight. Tuesdays had become “terrible”
Tuesdays for me, probably because clinic was on Tuesday
so that was the day we got all the bad news. It was a
Tuesday we were told she needed a transplant, it was
a Tuesday we were told that our options were reducing,
and we were now only hours away from another Tuesday.
At 10:10pm that Monday, just 17 days short of her 10th
birthday, we said goodbye to our sweet little girl.
You can rest easy now. There is nothing more to struggle
with.
love and learnings.
Kristen taught us all so much in her 10 short years and
never as much as in those long 3 months:
♥ How to befriend everyone
♥ How to always love life,
♥ How to be silly and have fun,
♥ How to enjoy each other’s company in silence,
♥ The value of a Hug,
♥ How to be courageous in the face of fear,
♥ How to have hope, when there is little.
Heart
Angels
Millie falla
Born 9th April 1999
Resting Peacefully 30th June 007
Kristen Potts
Born 10th August 1997
Resting Peacefully 3rd July 007
Jaime ekberg
Born 19th December 2005
Resting Peacefully 3rd October 2007
We send our sincere sympathy and loving
thoughts to their families and friends
Being deeply loved by someone gives you strength,
while loving someone deeply gives you courage.
Lao Tzu
HeartKids Victoria - Spring 007 Page 5

Hello everyone,
7 West News
It is my pleasure to write and inform you about the
exciting introduction of the ventricular assist device
(VAD) programme at the Royal Children’s Hospital
(RCH).
The programme is an extension of the cardiac
transplant programme and has been formally funded
since March 2007.
Many pediatric VAD programmes have already been
established in many centres around the world with
successful results. Implementing this programme at
the RCH will allow us to, not only offer a much needed
therapy, but also be consistent with world standards.
The implantable device is capable of providing short
or long term support of the right side, left side or
both sides of the heart. It can be used as a bridge to
heart transplantation or bridge to recovery, meaning
the heart function returns to normal after a period of
support.
Once the child has recovered from the operation of
implanting the device, they undergo rehabilitation
with physiotherapy which puts them in an optimal
condition for when a donor heart becomes available.
Some children may even be discharged home if their
condition is stable enough.
So far seven children have been supported with
this therapy. Four of those have been successfully
transplanted and one explanted (ie. having the
VAD removed) due to improved cardiac function.
Unfortunately two children have passed away as a
result of complications.
At present we have no children supported as one
candidate received a transplant in June 2007 and
another explanted in July 2007. However, due to
the limited supply of donor hearts available and as
long as children require cardiac transplantation, this
innovative programme will continue to grow.
Kind regards
Hollie McCaig
VAD Co-ordinator
Royal Children’s
Hospital,
Melbourne
Sophie O’Haire,
Clinical facilitator
from Ward 7W,
(left) with a
cardiac patient
using a VAd
New items in 7W
This photo shows
one of the new
bedside chairs in
the cardiac ward
and features the
gorgeous Charley
graham and her
mum Heather
This baby swing has been
purchased from a donation by
Waverley forklifts in loving
memory of owen Paul Crew.
Owen’s dad, Paul works at
Waverley forklifts.
The Karatjas family
donated 10 Cd players
and some lullaby Cds
to 7 West to thank
the staff for all the
fantastic care they gave
their daughter Chloe
The Adair family donated some
beautiful handmade rugs to iCu
and 7 West in memory of their
son, finn Adair. finn passed
away in october last year
due to liver failure from his
Alagille’s Syndrome. He also
had a major heart condition
which required open heart
surgery at 15 weeks. The
family wanted to give something
back to the wards that took
such fantastic care of not only
finn, but them as well.
The rugs were made by Finn’s
Mum Martine and the wonderful
ladies of the Beulah CWA and
the Hopetoun Patchwork Club.
Martine’s aunt is a member of
both clubs and she organised
the whole project.
donations to HeartKids for Ward 7 West
HeartKids wishes to thank these three families for their
generous donations. If you are considering making a
donation (either financial or products), we would like you
to know that HeartKids is happy to coordinate the donation
on your behalf. If you would like us to assist in this way
cheques need to be made out to HeartKids. We have
access to a Wish-List from the ward and can liaise with
you as to how your donation can be used. Alternatively,
you may make your donation directly to 7 West/Cardiac
Unit/ICU or the appropriate RCH Department.
Page 6 HeartKids Victoria - Spring 007

News from the RCH
The Starlight Express Room has been brightening the
lives of kids in hospital for the last 10 years and the newly
refurbished room will provide a more exciting experience
for them. Highlights of the new room include the entry
tunnel which features a galaxy mural, state of the art audio
visual equipment and control centre, a new stage area
for performances and celebrity guests, dedicated gaming
areas and overall a more contemporary look and feel
created by brand new furnishings and fittings.
“There have been 75,000 visits to the room in the past
12 months demonstrating the importance and need for
Starlight to help restore a little joy and laughter into the
lives of sick kids. We know the new room will create a
more high tech entertainment haven where children can
escape the boredom and loneliness of hospital life,” said
Ross Wyatt, Starlight State Manager.
Starlight express Room
Starlight Express Rooms are located in seven of the major
paediatric hospitals throughout Australia and are managed
by a professionally trained entertainer known as Captain
Starlight. The Starlight Express Rooms and Captain
Starlight provide hospitalised kids and their families with a
broad range of activities and much needed entertainment.
Children too ill to leave their beds are also visited by
Captain Starlight at their bedside and can enjoy watching
the antics and fun of Captain Starlight from their hospital
bed on Starlight’s TV Channel.
The Starlight Express Room is one of the many programs
the Starlight Children’s Foundation provides. To find out
more about Starlight or how you could make a difference
to the life of a seriously ill child visit www.starlight.org.au or
call 1300 727 827.
New Hospital Timeline update
In november 2005 the Victorian Premier announced
that the site for the new Royal Children’s Hospital, with
capacity to treat an extra 35,000 patients per year, will be
immediately to the west of the existing hospital.
Premier Bracks said two modern buildings at the existing
hospital would be retained but others would be demolished,
ultimately increasing the size of Royal Park.
‘Parkland provides one of the most powerful forces in lifting
a child’s spirits and aiding recovery, and the new hospital
will be flanked by open spaces on three sides’, Mr Bracks
said.
The existing RCH and carpark will continue to be fully
operational until the new hospital opens in 2011 with a new
carpark providing 2000 spaces - 800 more than present.
In July 2006 the Minister for Health Bronwyn Pike
announced the shortlist of 3 consortia to provide proposals
for the development of the new hospital.
In october 2006 a project brief which detailed the design,
technical, commercial and service requirements, was
issued to the 3 shortlisted consortia. The tenderers were
shortlisted to two in may 2007.
In early September 2007 the Victorian Minister for Health
announced that planning for Victoria’s new world-class $850
million Royal Children’s Hospital had taken the next key
step with the decision to enter into exclusive negotiations
with the Children’s Health Partnership consortium.
The Children’s Health Partnership consortium comprises
Babcock and Brown as sponsors, Bovis Lend Lease as
builder, Spotless Group as facilities manager and architects
Billard Leece, Bates Smart and HKS (US).
Health Minister Daniel Andrews said the negotiations
are expected to enable the consortium to address any
outstanding design and commercial issues associated with
its proposal, prior to signing contracts later in the year.
Mr Andrews said the process allowed the Government
to revert to the other short-listed - the Plenary Health
consortium - in the event negotiations did not reach a
satisfactory resolution. It also means construction is still
on track to begin later this year.
Extracts from Media Releases, Victorian Government Health
Information Website ‘The new Royal Children’s Hospital project’
http://www.health.vic.gov.au/rch/
HeartKids Victoria - Spring 007 Page 7

Special interest Contacts
HeART TRANSPLANTS
In 2002, the Holden family’s HeartKid,
Jacob, was so sick the only suitable
treatment was a heart transplant. We
are pleased to welcome Belinda Holden
as a parent who is offering to talk to others
who are having a similar experience
with their child. Her phone number is
(03) 5282 4486.
MuLTiPLe BiRTH
Kathryn Blyth has five children and her
HeartKid Emma is one of twins. If you
have a multiple birth, she is happy to be
contacted on (03) 9744 4480.
PACeMAKeRS
Mandy Tichelaar’s daughter, who was
born in 1996, had a pacemaker fitted
when she was 17 weeks old. She would
be happy to talk to anyone whose child
has a pacemaker. She can be contacted
on (03) 9728-6984.
22q11
Joanne Hanley’s son Ethan has been
diagnosed with a chromosome deletion
called 22q11. Joanne is happy to talk to
others who also have a child with this
diagnosis. You can phone her on (03)
8790 6653.
EBSTEIN’S ANOMALy
Several families who have children with
Ebsteins Anomaly are planning occasional
get-togethers. For more information
contact Kathy Sims. Please phone
her on (03) 5831 1110 and do leave a
message if she’s not home, or email:
ksims@aapt.net.au
OVER 18’S
If you are over 18, have grown up with
a heart condition and would like to meet
some other young adults - leave a message
for Erin on (03) 9513 9030.
KAWASAKi diSeASe
Anyone seeking information about Kawasaki
Disease or family support can
contact Shirley Mates on (03) 9894
1257 or email akfn@optusnet.com.au
KABuKi SyNdRoMe
Stacey McKiernan is the Victorian contact
for the Australian Kabuki Support
Association. If your child has KS or you
know someone with KS, please feel free
to contact her by email: dsmckiernan@
dodo.com.au or phone (03)5275 1542.
HyPoPLASTiC LefT HeART
SyNdRoMe
The ‘Hearts of Hope’ group offers support
to families with a child with HLHS
and similiar heart conditions. More
information available www.hearts-ofhope.org
or from Leanne Amarant
(Victorian contact):
Leanneamarant@hotmail.com,
ph (03) 5358 2945
or Csaba Ovari (Tasmanian contact):
csaba.ovari@hearts-of-hope.org,
ph (03) 6229 8169
BeReAVed fAMiLieS
eMAiL SuPPoRT gRouP
Hearts of Hope Australia has set up
an email support group for parents
who have lost a child to a Congenital
Heart Defect. You can learn more via
the link: http://www.hearts-of-hope.
org/support/bereavment/intro.htm
AuSTRALiAN SuddeN
ARRHyTHMiA deATH
SyNdRoMeS (SAdS)
fouNdATioN
long Qt Syndrome (lQtS) is an abnormality
of the heart electrical system.
This pre-disposes affected persons to
a very fast heart rate. This syndrome
can be inherited or acquired.
Contact details: Australian SADS
Foundation
PO Box 19, Noble Park, VIC 3174
Phone: (03) 9798 5781
Email: sadsau@optushome.com.au
Website: www.sads.org.au
CARdioMyoPATHy
ASSoCiATioN of
AuSTRALiA LTd
The 4 main types of cardiomyopathy
are:
• Dilated or ‘enlarged’ heart
• Hypertrophic or ‘thickened muscle’
• Arrhythmogenic right ventricular
• Restrictive or ‘stiff’ heart
The association aims to:
•
•
•
•
Help individuals and families to
meet
Provide up-to-date information
Increase public awareness
Foster medical research
more information:
www.cmaa.org.au/
publicAtiOns
AvAilAble
If you would like to receive any
of the following items, please
forward your request, and payment
if applicable (special rates
apply for bulk purchases), to:
HeartKids Victoria,
C/o Cardiology department,
Royal Children’s Hospital,
flemington Rd,
PARKViLLe ViC 3052
Please allow up to 3 weeks for
delivery. In most cases delivery
will be within one week.
These items may also be borrowed
free of charge from the
HeartKids library, and some
are also available from various
departments of the Royal Children’s
Hospital.
For more information phone
Lynette on (03) 9333-1586.
• ‘Children with Heart Problems’
book, now free for families;
bulk rates on application
• ‘I Can See Angels’ children’s
picture story book $5, plus $4
p&h.
• Anticoagulant Therapy booklet
• ‘Information for patients and
parents about the Fontan Operation’
(Please note - a copy can be
printed from the RCH website:
www.rch.org.au)
• Dental Health brochure
• Infective Endocarditis brochure
• Teachers and Carers brochure
• Medical history forms for
schools/kinders
• ‘Feeding Babies with a Heart
Problem’
(If you have access to the internet,
the above 5 items are
available for printing from our
website:
www.heartkids.org.au)
Page 8 HeartKids Victoria - Spring 007

HeartKids Australia Conference 2007
clare Fountain, President of Heartkids Victoria in July 2007, tells us about the HKa conference:
This year I had the privilege of attending the 2007 HeartKids
Australia Conference. This year it was hosted by South
Australia, whose Conference Committee did a fabulous
job of organising it.
The Conference was for 3 days, July 13th – 15th.
The Conference set 3 main goals:
♥ Set the clear direction for HeartKids Australia
♥ Clearly articulate ‘How’ we will achieve this
♥ Ensure that there is alignment of our Vision,
Strategy and Structure
Each state sent their two Board members plus their
Executive Managers and Family Support Coordinators.
Scott Reinke, Matt Finnis, myself, Alison Byrne, Lynette
McCoullough and Tracy Stanley travelled from Victoria.
For many of us, we speak on the phone to members of
the Australian HeartKids community or via email so it is
always lovely to catch up in person.
The HeartKids Australia (HKA) Annual General Meeting
was held on the first day followed by dinner at the Oxford
Hotel, which is famous in Adelaide for its burgers.
On Saturday morning the whole group joined together
for a workshop run by facilitator Stephen Shepherd.
He took us through where we were ‘at’ with HKA and
guided us through the process of clarifying the goals for
the conference and also for the organisation. He did a
fantastic job considering the room was full of people with
differing ideas, expectations and opinions.
With any organisation in its early stages, people come
from different spaces – each state group has its own focus
and specialties. What came out in the Conference is that
the 5 states are different but we all have one focus. It was
decided that the focus was:
our Vision
Embracing the future for HeartKids.
our mission
Australia will have a reduced incidence of children
with heart disease, a reduced mortality rate in children
affected by heart disease and significant support will be
provided to HeartKids and their families.
This will be achieved through the development of:
Research, Support, Awareness and Advocacy.
This was approved by the HeartKids Australia Board at the
end of the weekend.
Saturday afternoon brought us some speakers that
provided us with some excellent food for thought.
“Cardiology Services in SA” by Dr Gavin Wheaton,
Head of Medicine CYHS Women’s and Children’s
Hospital, Adelaide
“The Transition from Heart Teens to Adults” Dr Patrick
Disney, Cardiologist RAH and Adelaide Cardiology
“The Importance of Early Childhood” Professor Dorothy
Scott OAM University of SA
“Child Health Education Support Services – CHESS”
Ms Heather Ashmeade, Department of Education and
Children’s Services (DECS).
South Australia selected the speakers to provide us with
a broad subject matter that was interesting for the whole
group. It was also great to see some South Australian
members in the audience.
Neil McWhannell, the Chief Executive Officer of HeartKids
Australia, finished the afternoon with his presentation
“Setting new directions” which gave him the opportunity to
present to the whole group for the first time.
We then broke into 3 streams - the Board, Executive
Managers and Family Support Co-ordinators - for continued
discussions and meetings.
True to tradition more conversation was carried out over
dinner. It is an important aspect of the Conference – it is
often in the informal conversations that tips and information
is shared across the state groups and even amongst
delegates from the same state.
HeartKids Australia has taken a step to the ‘next’ level by
employing a CEO. It has secured funding and so is in a
strong financial position and the Conference saw the state
groups and Board unite and set a clear direction of how
it is to move forward. As a Board member it was exciting
to see how much potential HKA has to support the state
groups in many ways as well as create its own presence in
the competitive Australian charity market.
On Sunday we had an early Board meeting followed by
the group coming together as a whole to set the strategic
direction for the next 12 months. Before hopping on our
planes we had a lunch organised by the local Kiwanis at
Glenelg beach which was lovely.
Each year the Conference serves to remind me that
HeartKids Victoria is part of a very special wider community.
HeartKids Australia is becoming stronger and as it grows
so does the size of the HeartKids community. Increased
awareness assists with securing funding. Support,
research and advocacy can be then be more significantly
funded.
The future for HeartKids Australia is looking bright and
just like our HeartKids it will require courage, strength
and tenacity to grow to its full potential. As with HeartKids
Victoria, challenges will surface, Board members will
change but the decisions made at this Conference have
provided a clear strategy of how to keep moving forward.
HeartKids Victoria - Spring 007 Page 9

Research News
To: HeartKids
From: aaron allen [mailto:roknee@hotmail.com]
Sent: Sunday, 16 September 2007
Subject: Request for Research Participants
To whom it may concern,
My name is Aaron Allen and I am conducting a thesis
as part of my Doctorate of Clinical Psychology at
the Australian Catholic University. The attached file
details the nature of this project.
I am very interested in hearing from parents who
are raising a child with any form of disability – be
it physical, sensory, developmental, behavioural,
psychiatric, etc. Participating involves responding to
News from Monash Heart, Monash Medical Centre, Clayton Campus
By Karen Anderson Weller, Chief Paediatric Technologist
I have been a member of the Paediatric Cardiology
team since 1992.
Through the 90’s we used to frequently sedate children
between the ages of 6 months and 3 years of age in
order to perform a routine cardiac ultrasound.
Cardiac ultrasound is a common diagnostic tool used to
diagnose complex and simple congenital heart disease.
A full examination takes around 1 hour. Imagine trying
to keep an infant still for an hour!
Sedation used to be given orally, 1/2 hour before the
examination. As with all drugs, there are risk factors
associated. The most common factors we experienced
were hyperactivity, nausea and vomiting, often ending
in only very limited information being gained and the
child having to come back for another visit some weeks
down the track.
Unfortunately this was a common outcome and proved
to be very stressful for the family and technical staff
alike.
In 1999 we extended the Cardiology Department. We
planned to improve the environment by having a larger
room that would accomodate a large single bed rather
than an examination couch. This would enable parents
to lie down with their child, give them cuddles, even
breast feed.
We moved into our new room in 2000. Then along
came Shirley Mates with her son Cameron for his
routine echocardiogram.
Shirley came up with some very interesting ideas, took
her ideas to HeartKids and by 2002 we had in place a
fabulous, child and parent friendly laboratory.
Request for Research Participants
an online questionnaire and takes, at most, 40 minutes
to complete. You can see the questionnaire via this
link: http://www.surveywizard.com.au/coping/
I am approaching organisations from a number
of English speaking countries to assist me in the
accumulation of parents’ responses. I would be
extremely grateful if you would assist me by advertising
my research via your newsletter.
Interested parents can contact me by email roknee@
hotmail.com or on my mobile 0401 669 944. I will send
them a document describing the research so they are
fully informed prior to contributing.
Thank you, Aaron Allen
The Waverley Kiwanis Club
kindly donated an entertainment
unit including a TV / DVD player
(incidently Shirley’s husband Brian
belongs to the Whitehorse Kiwanis
Club who work very closely with
Waverley).
The local Splash’s Swimming School did a ‘Swimathon’
for HeartKids, raising hundreds of dollars which was
used to buy educational toys and children’s furniture.
HeartKids donated further funds for purchasing DVDs,
videos and books.
Then the magic happened! The technologists noticed
a marked decrease in the requirement for sedation.
Children would come in, lie down with mum or dad,
watch some videos, have some fun with the toys, have
their ultrasound and would not want to leave until the
video had finished!!!!
As a result of these changes over the past 5 years, we
are sedating less than 10% of all children in the 6 month
to 3 year age group.
The Paediatric Cardiology team at Monash have been
so impressed with these changes, we are currently
looking at publishing our findings in the hope that other
Paediatric laboratories around the globe will adopt a
similar child friendly programme.
Thanks HeartKids - without your generosity, these
simple, yet very successful changes would not have
been possible.
From the bottom of our hearts, again thank you
Karen
Page 30 HeartKids Victoria - Spring 007

Research News
a meSSaGe oF HoPe FoR tHe Fontan PatIentS
The Fontan procedure is the end-of-the-line operation for all children with congenital heart defects who cannot be
offered a bi-ventricular repair. Dr Fontan described this operation for the first time in 1971 1 . In this operation the blood
coming back from the body flows directly into the lungs without passing through a ventricle (pumping chamber). In this
initial operation, the right atrium (collecting chamber) was isolated from the rest of the heart and connected to the right
pulmonary artery (atrio-pulmonary connection) (figure A). Unfortunately, with time, some of the patients had their right
atrium dilating and they suffered from tachycardia (fast heart rate) and even heart failure. The Fontan operation was
then modified in 1988 for the lateral tunnel (figure B) and in 1995 with the extra-cardiac conduit in order to have a better
streaming of the blood when it flows through the chest (figure C).
We recently reviewed our experience with the Fontan operation in the Royal
Children’s Hospital, and it was the first time that the long-term benefits of
these modifications of the Fontan operation could be proven 2 . Between 1980
and 2000, 317 patients were operated on at the Royal Children’s Hospital.
Our patients achieved a much better survival then previously reported, and
it seems that these results should even improve further. We have now been
able to prove that patients who had the modifications of the Fontan operation
are doing much better that those who had the initial operation. Those with
a lateral tunnel operation had a 94% chance to be alive at 15 years. Also
they had much less tachycardia than the patients with the first generation
Fontan.
Forty patients in Victoria also agreed to come back to the hospital to have
their heart tested, perform an exercise study and answer a questionnaire on
quality of life. Again, patients with the lateral tunnel were doing better than
the patients with the classical atrio-pulmonary connection. The best news
brought by this study was that all these patients, provided that they did not
suffer from tachycardia, had a completely normal quality of life. They may be
limited in their sport capacity, but it does not affect them in the way they enjoy
life, achieve their goals and interact with their family and their partners.
In summary, Fontan patients are doing much better than initially thought. We do not know yet their very long-term future,
but it seems promising, as long as we can prove that we have made progress in their care.
MANY THANKS TO THOSE WHO HAVE HELPED IN THESE STUDIES !!!!
Our thanks to Dr yves d’Udekem, Consultant
Cardiac Surgeon, for preparing this summary
of the fontan research study for HeartKids.
1. Fontan F, Baudet e. Surgical repair of tricuspid atresia. thorax. 1971;26:240-8.
2. d’Udekem Y, Iyengar aJ, cochrane ad, Grigg le, Ramsay Jm, Wheaton GR, Penny dJ, Brizard cP. the Fontan
Procedure: contemporary techniques Have Improved long-term outcomes. circulation. 2007; In press
HeartKids Victoria - Spring 007 Page 31

The Portsea Camp is proud to have been associated
with Heartkids Victoria through The Portsea Camp’s
sponsorship of the Heartkids annual camp.
It was certainly a pleasure for the camp to host the event and to be in a financial position to be
able to offer the camp as the venue. Once known as the Lord Mayor’s Camp for Country Children,
The Portsea Camp has continued the Mission of the camp’s founder, Sir Thomas Nettlefold, to
provide disadvantaged and special needs children with a ‘holiday of a lifetime’. Whilst we began in
1946 with a strong focus on country children, today the school holiday charity camps have children
coming from country and metropolitan areas.
Strongly supported by Rotary and the Lord Mayor’s Charitable Fund, nevertheless the camp is
always seeking volunteers to help run the camps. Each camp of 270, 9-12 year old children is run
by our paid staff with the support of 60 volunteers, some experienced in the recreation area, others
who act as parents to the children, ensuring their general needs are met. Additionally we have
the support of volunteer doctors and nurses at every camp.
Anyone who is interested in helping as a volunteer or can turn their hand at maintenance works
when we run our annual working bee weekends is most welcome to discuss this with the camp’s
CEO, Stephen Eastop, on (03) 5984 2333. stephene@theportseacamp.com.au
(www.theportseacamp.com.au)
HeartKids are promoting Portsea camp in appreciation of their contribution to the 2007 teen camp.
Page 3 HeartKids Victoria - Spring 007

Celebrations and Achievements
Kelli Densten
has started
nd yr TAFE
and 1 day per
week work
placement.
She was in
the Albury
Gang Show
with the
Guides/Scouts.
Madison Bailey (6) and her
brother Tane (4) have recently
moved to Melbourne from Sydney.
Madison has started school this
year and is thriving on learning
new skills, although sometimes
she does get tired.
Amy Bourgein celebrated her
1st birthday in May this year.
She has been walking from age
10 1/ months.
Abbey Pengilly started preentry
kindy in Term 3 this year
and she then starts kindy in
Term 4.
Riley McDowell started school
in 007.
Tony Fulton has started
secondary school this year &
is doing really well.
Chloe Downs had her Fontan
surgery completed in October
last year.
Holly Canning has started prep
at school & is doing well.
Jack Irani has just turned 4
and his heart is excellent!
Alannah Gilmore has started
school this year.
Ethan Hanley started school
this year.
Here is
Matthew
Leening
on his
first
day at
Avondale
Primary
School
Ryan Halls travelled to Germany
with his mum & brother, and met
his German family for the first
time. He climbed a mountain (1
hour) and also went on a 30 km
bike trip!
Rebecca Meyer celebrated her 5th
birthday in July. She is at kinder
now & will commence Prep in 008.
Nicholas has turned 5 this year.
Charley Graham with her
Mum & Dad were so excited
to meet the NRL Cowboys!!!
HeartKids Victoria - Spring 007 Page 33

Cuppa for HeartKids 2007
Cuppa for HeartKids
We raised $6628.20 from our 2007
Cuppa For HeartKids in July.
Special thanks to Dilmah Tea and Moccopan
Coffee for the supplies for our starter packs.
We would like to thank the families who
hosted a Cuppa:
Cheryl Simcox
Joanne Arrowsmith
Sarah Spenceley
Jenny Pike
Joanne Crossin
Natalie Palmer
St Dominic’s School
Southern Cross Computer Systems
These events helped to increase awareness
about childhood heart disease in the
community and raise valuable funds to
enable HeartKids to continue to offer a
strong, diverse and consistent support
service.
HK Blake Crossin’s
family held a
Cuppa in July.
The photo (left)
shows Blake’s
cousin emily and
his Aunty Colleen.
(Right) Thanks to
Andrea (Blake’s
Pop’s partner) who
helped out so much
and organised the
day at the Lillian
Martin Home.
‘A Cuppa with Scrapbooking’
HK William draws the
raffle ticket with Mum
William with raffle winner Kylie
William’s storyboard display
William helping to count donations
The Arrowsmith family
held our “Cuppa for
Heartkids” on Sunday
29th July and as a
group we decided to
combine the day with
a scrapbooking gettogether.
The day started
at 10am and finished
at 5pm. We had a total
of 10 scrapbookers, 1
tapestry lady and 25
people dropping for a
cuppa (though some of
these made a day of it!!).
We had a raffle, with
the winning ticket being
drawn by HK William and
also made sure everyone
signed their name for
William’s album!!
The kids (and adults)
loved our heart shaped
cakes and heart sprinkle
cupcakes along with all
the other yummy food and
William loved decorating
the house with heart
themed decorations and
balloons.
We had a noticeboard
with photos, posters and
William’s story for our
guests to read. So far we
have raised $810.20 with
a couple more donations
coming in the mail. We
had a fantastic day
and hope to make it an
annual event!!!
Jo Arrowsmith
‘Cuppa for HeartKids in Hobart’
Page 34 HeartKids Victoria - Spring 007

‘Have a Cuppa for HeartKids’
For the second year in the row, the Palmer Family held two
morning teas for Heartkids - this time at Southern Cross
Computer Systems (SCCS) and at St Dominic’s Primary
School.
This year there was an even bigger and better turn out
at both events, and with a few people knowing now what
we did last year, we were able to engage more helpers to
get the morning teas up and running. We also had more
people willing to donate morning tea items for the events.
SCCS matched all staff donations, which made a
huge impact. And we had some lovely shops around
Camberwell/Canterbury/Surrey Hills, who donated items
that we were able to provide as a door prize.
We would like to say a special thank you to St Dominic’s
Primary School, who supported the morning tea with
gusto, encouragement and assistance that really showed
their community spirit. We would also like to say a big
thank you to the Carpark Café, the Pure Bread Bakery,
Bakers Delight on Maling Road, and Wattle Park Bakery
who provided some delicious treats and fed the masses.
Also to Anita Monaco and the two lovely Nonnas, Belinda
Cade, Christine Molino, Josie Roker and Maree Monaco
who helped bake items, and helped with organising the
events.
Cuppa for
HeartKids
at Southern
Cross
Computer
Systems
Thank you to Petite Living and Heather Brown – both
gorgeous children’s wear stores who provided their wares
for sale at the school morning tea, with part proceeds going
to Heartkids. And Belinda Cade from Tupperware who
donated a whopping 20% of her sales to Heartkids. And
lastly to B’Inspired, Canterbury Kids, Classic Characters,
Belinda Cade at Tupperware, Miko Child, and Tracy
Stanley with Intimo Lingerie for their lovely gifts which went in to our fabulous door prize at St Dominic’s. If I have
forgotten to thank anyone, I apologise profusely because we wouldn’t have been able to raise the great result of $4100
without them! Natalie Palmer
Cuppa for HeartKids at St. Dominic’s Primary School
HeartKids Victoria - Spring 007 Page 35

fundraising
THANK you!!!
All of us at HeartKids would like to thank the following for their generous contributions
- financial, goods and services - since our last newsletter:
The Chapmans
Peter Bird
Magdelin Tey
Boehringer Ingelheim
Mr & Mrs Reilly
Waverley Forklifts
Your Business Angels
Bent & Cougle
Sheelagh & Vic
Jacinta Smith
Roma La Roche
Bridget Mabbutt
L J Myers
Paul Henshall
John Scott
Stuart Walker
Dr Tracy Tulloch
Audrey King
Dr Mika Jormakka
Sarah McCleary
Catherine Gifford
Margaret Anderson
Anthony Ives
Janet Macleish
Susan Poulter
Stacy Spriggs
Stephanie Pennuto
Jen Bell
Jaye Morton
Catherine Yip
Roseanne Gagliardi
Annette Mackenzie
Janet Pound
Grace Giudice
Linda Di Stefano
Polly Poon
Maree Monaco
Romina Losurdo
Heather Wakefield
Liz Garlick
Heather Cameron
Thelma Ratcliffe
David Birrell
Ann Aylmer
Heather Hunt
Suzanne Canterbury
Kate Gibbs
Nadine Bolton
Mandy Duff
Lisa Kelly
Josie Roker
Simone Klaassen
Kerry Rendell
Anne Brookes
Jackie Jackson
Ruth Maher
Kate Blake
Virginia Williams
Kerry Horan
Christine Molino
Janine Bounds
Liz Scott
Susan Houlihan
Georgia Farrelly
Kate Wrathall
Connie Garraffo
Joe Monaco
Bella McCleary
Andrew Stoker
Mark Kalmus
Len
Andrew Galloway
Zoran Jakimosler
Rod McKenna
Ashutosh Kapse
Marcus Hanley
Edward Duckworth
Wendy Missen
Jarrod Bloomfield
Len Meyer
Tony Del Rosso
James Wright
Don Bath
April Neoh
Angela Nichols
Steven Cohen
Daniel Nyssen
Todd & Abbie Place
Emily Palmer
Olivia Cade
Jack Palmer
Anne Hish
Zoran Gudzosky
Tania Del Tito
Lynette Coulston
Amanda Rynne
Debbie Raftis
Fred Coulter
Matthew Raftis
Kylie Kneebone
Doreen Gheblikian
Anna Raftis
Liza Sinnatt
The Adair Family
The Karatjas Family
Moccopan Coffee
Dilmah Tea
The Pratt Foundation
Heather Heanue
Network Services, CitiPower
Toongabbie Mechanics Institute
Cheryl Simcox - Cuppa For Kids
Jenny Pike - Cuppa For Kids
Joanne Arrowsmith - Cuppa For Kids
Sarah Spenceley - Cuppa For Kids
Entertainment Architecture Pty Ltd
Sims & Finn Chiropractic Pty Ltd
Elizabeth Atkinson, Australian Kids In Need
Drs Rick Cavirchvol & Tassia Kolesnikow
Natalie Palmer - Cuppa For Kids
Southern Cross Computer Systems
Joanne Crossin - Cuppa For Kids
Paul Curmi and Sylvia Marson
Alexander Michel Curmi Memorial Donations
James Cooper Memorial Donations
Julie Heather - Sausage Sizzle
And a big THANK you to all members who included a donation with their membership renewal.
‘Run For the Kids 2007’
HeartKid Jaime Sakkas pictured with members of her
family who participated in ‘Run For the Kids’ this year
Sausage
Sizzle
creates
local
awareness
Super Sausage Sizzlers - Julie Heather and helpers
at the recent fundraiser at Wonga Park
Page 36 HeartKids Victoria - Spring 007

fundraising
FundrAising AppeAls Act...
On the 1st July 1999 new fundraising legislation was
approved for Victorian ‘Not for Profit’ organisations
- The Fundraising Appeals Act 1998 (no.78/1998).
To ensure HeartKids does not breach the legislation
we need our members’ assistance. As well as the
legal implications, it is very important that we always
protect the name of HeartKids Victoria in the community.
It really is very important that the HeartKids Committee
knows in advance about all fundraising that is
being conducted in the name of HeartKids Victoria. If
you have any queries about fundraising for HeartKids
Victoria please phone Alison Byrne on 9513 9030.
donations
HeartKids Vic Inc is a charitable, non profit
association. Donations of $2 and over are
tax deductible and can be forwarded to:
HeartKids Vic Inc
c/o cardiology dept
Royal children’s Hospital
Flemington Road
Parkville VIc 3052
A receipt will be forwarded.
thank you!!!
AdACS Systems & HMAA
Recently HeartKids was delighted to be selected
as the preferred charity for the Hotel, Motel
and Accommodation Association (HMAA). As
a result one of the HMAA members, ADACS
Systems (ADACS) was so moved by our
organisation that they were keen to financially
support HeartKids.
ADACS is an Australian security organisation
specialising in the design, installation and
commissioning of all integrated electronic
security systems as well as the manufacturing
and distributing of a comprehensive range of
superior security products, both locally and
internationally.
ADACS has a special offer for HMAA and
HeartKids members. With every security system
installed, $5 per month will be contributed
to HeartKids for our support programs. We
welcome both the HMAA and ADACS to our
community and thank them for their generous
support.
money collection tins
HeartKids are able to distribute our own money
collection tins as well as the RCH Good Friday
Appeal tins. If you would like a tin for your workplace
or elsewhere, please ring lauren Johnson
on (03) 8790 4414. Please note these tins are not
to be used for door knocking.
ongoing fundraisers
1. When you apply for a Community Benefit
Card card to use in a Ritchies Supermarket
and Liquor Store, you can nominate HeartKids
as the benficiary to receive 1% of the value of
your shopping.
2. Stuck on You labels is a large supplier of
personalised children’s products. HeartKids
has registered with them as an on-going fundraiser.
Each time they receive a mail, phone or
internet order with ‘HeartKids’ name mentioned,
the commission from that order is automatically
credited to HeartKids.
Secure a Future
for the Kids when
you Secure your
premises with
ADACS
Commision your alarm monitoring with ADAC’s Security
at $34.95 per month - and ADACS will donate $5 per
month for every new sign up to HEART KIDS
(HMAA’S preferred charity organisation).
1800 002 300
*see website for full details
HeartKids Victoria - Spring 007 Page 37

Merchandise
Zippa Polo Shirts
The price and size details are on the order form.
HeartKids Zippa mugs
One very popular item in the
range is the HeartKids mug.
Being breakable it is not suitable
for posting, but we will
do our best to make suitable
arrangements for delivery. Alternatively
you can arrange in
advance to pick one up when
you next visit the RCH or buy
one at a HeartKids function
(eg. our Annual General Meeting
or Christmas Party). They
cost $10 each.
HeartKids lanyard
The lanyard is aqua - blue in
colour. It is 57 cm long and has
HeartKids web address faintly
displayed along it.
HeartKids
Merchandise
on the order form we have
listed some of the HeartKids
merchandise which is available.
as well as obtaining quality
items, you assist us with fundraising
which in turn benefits
the children visiting the Royal
children’s Hospital for their
cardiac care.
Please phone the HeartKids
messagebank number (03)
9513 9030 with any merchandise
queries.
Angels cover.eps (imported) 14/11/02 9:18 AM Cyan Magenta Yellow Black
‘I can See angels’
This children’s book was written
by Danny McDowell, dad to
HeartKid Riley. It costs $10.00
plus $4.00 postage and handling,
and is now available from
HeartKids, or through Danny.
Just call him or his wife, Julie,
on 03 9729 8414 and they will
arrange to send you a copy.
As 100% of the proceeds
are being donated to cardiac
needs at the Royal Children’s
Hospital, you are supporting a
worthy cause.
HeartKids Badge
Our lapel badge is Red & Blue
with ‘HeartKids Vic’ on a white
banner.
auxiliaries new
Shopping Bags
The RCH Auxiliaries
have added a new
bag to their range of
popular carry bags.
Available in Black,
Purple, Pink, Aqua,
and Orange. Plastic
bottom insert to ensure
a sturdy base.
Page 38 HeartKids Victoria - Spring 007

HeARTKidS MeRCHANdiSe oRdeR foRM
Your Name: ____________________________________________________
Address: ____________________________________________________
Phone No: _____________________ Post Code: ________
deScRIPtIon QUantItY $ total
HeartKids Lapel Badge (red & blue with white banner) 4.00
HeartKids lanyard (quick release, swivel & alligator clip) 5.00
Zippa t-Shirts: note - limited stock, some sizes unavailable
Zippa T-Shirts - Kids ( size 0, 2, 10, 12, 14 available) PleaSe 15.00
“ - Adults (size S, L, XL, XXL, XXXL) cIRcle 16.50
Zippa Polo Shirts - Adults (size XS, S, L, XL, XXL) SIZeS 20.00
HeartKids Zippa mugs (not suitable for posting) 10.00
Zippa Baseball cap (colour - red; one size fits all) Sold oUt
Books - ‘Children with Heart Problems’ free
“ - ‘I Can See Angels’ 10.00
Stationery:
Sheets of wrapping paper (49 cm x 69 cm):
50%
OFF
- Gift Wrap - Kids (3 sheets per pack) 1.00
- Gift Wrap - General (3 sheets per pack) 1.00
SUB total $
50% discount on above merchandise: - 50% $
dIScoUnt total $
RCH Auxiliary Carry Bag (2 sizes; many colours); 2.00
neW RCH Auxiliary Shopping Bags (with sturdy base insert; 5 colours) 2.00
Zippa day merchandise: Romantic CD 15.00
Floater pen 5.00
Valentine Card 4.00
Fridge Magnet 3.00
Sticker sheet 2.00
SUB total $
Please add Postage & Handling:
• add $2 if order is under $10; add $4 if order is $10 and over
• if ordering polos or T-shirts, add $4 per shirt
$
oRdeR total $
PaYment oPtIonS
credit card Payments: Visa or Mastercard Expiry Date: /
cardholder name: .............................................................................. amount: $....................
cheques - if applicable, please make cheques payable to HeartKids Victoria.
Send order form and payment to:
HeartKids Victoria, c/o cardiology dept RcH, Flemington Road, Parkville VIc 3052
HeartKids Victoria - Spring 007 Page 39

SPONSORS
AUCTION ITEMS
1. Versace Home Collection
Medusa Red Comforter and Sheet Set made in Italy,
consisting of:
King size red and gold comforter
King size flat sheet in red and gold
King size fitted sheet in gold
King pillow case set
RRP$2490.00
2. Versace Ladies Couture Handbag
“Snap out of it”
Black patent leather with suede Greek fret with silver
studs.
RRP $ 3525.00.
3. Crown Getaway
Gift Certificate for 1 night in a Deluxe Room including
Breakfast, dinner voucher & Valet Parking RRP $660.00
4. Palazzo Versace Getaway
Two nights accommodation in a luxurious Lagoon
Room at Palazzo Versace Gold Coast, including a full
buffet breakfast for 2 Plus a 6 course degustation
dinner for 2 in Vanitas Restaurant, inclusive of wines
selected by the hotel Sommelier conditions apply.
RRP $1600
Versace Luncheon
5. Versace DV One watch
Pink shinny ceramic case and bracelet, date, automatic
movement, mother of pearl dial, with rose gold plated
details.
R.R.P $4,999
6. A Day with Crown’s Executive Chef
Restaurant Operations- Andy North
This is a unique opportunity for a group of 10 people
to learn the skill of cooking from Andy.
The group will start the day by going to the market
with Andy and purchase the ingredients for a dinner
for 20 guests. Prepare the food with Andy in the
Crown kitchens and enjoy dinner with their partners
(maximum of 20 guests) at one of Crown’s restaurants
(to be selected by Andy).
R.R.P Priceless
RAFFLE ITEMS
1. Versace Ready-To-Wear wardrobe
conditions apply.
RRP $2500.00
2. Versace Dedalo 32cm wide vase in platinum.
RRP $1399
3. Versace fragrance hamper
RRP $500
4. Versace fragrance hamper
RRP $500
Versace and Crown invite you for lunch
to preview the new season launch of
autumn /winter 2007/2008 ready to wear collection.
Master of Ceremony: Ms Ann Peacock
Venue: Conservatory
Level 1, 8 Whiteman Street Southbank
Date: 17th of October
Time: 12.00pm for 12.30pm
Cost: $145 inc gst
Contact: Mary Rose Elefano
Telephone: 9292 6250
Complimentary Valet parking available from Versace Boutique
Proceeds to be donated to the Heart Kids Charity Foundation Victoria
HeartKids Victoria
Sponsors and Supporters
Page 40 HeartKids Victoria - Spring 007