City-Bay Success!! - HeartKids SA

Spring 2008
HeartKids of South Australia
Dr. Gavin Wheaton
HKSA’s Inaugural Patron
City-Bay Success!!
....read more on page 7
www.heartkidssa.org.au
Volume 2008 Issue 8

www.heartkidssa.org.au
Our VISION:
Embracing the future for HeartKids.
Our MISSION:
Australia will have a reduced incidence of children born with heart disease, a reduced
mortality rate in children affected by heart disease and significant
support will be provided to HeartKids families.
HeartKids of SA State Manager
HeartKids of SA 2009 Committee
Chairman
Matt Turner
Vice Chairman
Lee Morgan
Treasurer
Sue Virgili
Secretary
Dawn Lamont
Public Relations
Cathie Turner
Kerry Southwell
kerry.southwell@heartkids.org.au
Mobile: 0420 363 155
This will be achieved through the development of:
Support, Awareness, Advocacy and Research.
Committee:
Tim Round
Heather Round
Carly Nash
Lisa Guy
Nicole Carter
Wendy Duncan
(WCH rep)
Northern Territory Contacts
HeartKids of SA proudly supports the
children and families of CHD children
throughout the Northern Territory.
For all HeartKids enquiries please
phone: 0406 165 111 or go to:
www.heartkidssa.org.au
Permission to reprint any of the personal stories in this newsletter is required
from the author or the Chairman. Any other articles may be reprinted with an
acknowledgement to HeartKids of SA.
Please note that articles published in this newsletter do not imply endorsement
and may not reflect overall views of HeartKids of SA.
Also note that the opinions expressed in child stories represent personal experiences
and that medical details are specific to each 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.
(permission notice courtesy HK Victoria)
Family Support Coordinator
Kylie Bath
kylie.bath@heartkids.org.au
Mobile: 0424505833
Contact HeartKids of SA
Phone: 0406 165 111
email: mail@heartkidssa.org.au
PO Box 364,
North Adelaide, SA 5006
Regional Contacts
Lower South East
Angela Hein
08 8726 6292
Whyalla
Nicole Carter
0430583834
oebe@bigpond.com
A very special thanks to
Remax Hills and Country
Mt Barker for the printing of
the HKSA newsletter.
Their genorosity and kindness
has been greatly appreciated.
Thankyou!
Nth and West SA
Genevieve Wells
0427 362 474
08 8636 2474
Broken Hill
Kerri Simmons
(02) 8087-9249
0438 879 249
kerri.simmons@landmark.com.au
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Chairman’s Report
I took over from Lee
as Chairman just over
twelve months ago
and in doing so had
huge shoes to fill. To
say it was daunting
would be an understatement.
The work and commitment
of the 2006-2007 committee, and
committee’s from the years prior, laid
the foundations for what we have
been able to achieve over the past
year.
In February this year at a HeartKids
Australia Board meeting each state
was asked to present what its context
would be for 2008. For HeartKids
SA ours was to be ‘transition’.
This transition started in September
last year when HeartKids SA
was granted $44,000 in seed funding
from HeartKids Australia to enable
us to recruit a Family Support
Coordinator and a State Manager.
Previously these roles were filled by
volunteers, members of our committee,
who worked tirelessly to raise
the profile of our organisation and
to ensure that our members received
the support they needed, when they
needed it. Being able to employ people
into these positions would enable
us to provide a more coordinated,
consistent and strategic approach to
raising our profile, and the management
of our day to day operations,
as well as being able to offer a more
integrated support service.
I sincerely thank those individuals
who have given their time freely in
the past to provide support to our
families and for their endeavours to
raise our profile.
So the challenge for the 2007-2008
committee was to take our organisation
to the next level. This year we
have had to make the transition from
an organisation consisting solely of
volunteers to that of an employer.
Whilst we are still in this transition
period and have a long way to go,
the future looks very promising.
It has been a very busy year for
HeartKids SA and our achievements
for 2007-2008 include;
· A fantastic turnout to the Annual
Christmas Picnic, held in November
last year at St Andrews School in
Walkerville.
· Appointment of Kylie Bath into the
Family Support Coordinator position
as our inaugural employee, who
has done a fantastic job of supporting
our families both in and out of
the hospital.
· Appointment of Kerry Southwell
into the State Manager position, in
which she too has done an excellent
job in not only raising vital funds for
the organisation, but raising awareness
for children and our profile.
· Creation of the HeartKids SA Financial
Assistance Fund to help ease
the financial burden experienced by
families who must travel to Adelaide
or Melbourne for treatment. At this
early stage this fund will be used to
help subsidise some of the accommodation
costs of these travelling
families, but in the future we hope to
grow the scope of this fund to cover
many of the other costs that families
must bear whilst their children undergo
treatment.
· Launch of a new partnership with
IKEA Adelaide who are hoping to
raise $10,000 to assist families with
accommodation costs through the
HeartKids SA Financial Assistance
Fund.
· The formation of an Events and
Fundraising Sub-committee that
were able to raise approx $30,000
over the last 12 months from a
number of events that included a
Quiz Night attended by over 150
people, a movie night to launch our
new partnership with IKEA, various
fundraising BBQ’s across Adelaide,
the City-Bay Fun Run, with
169 participants sporting HeartKids
t-shirts and caps that were proudly
sponsored by IKEA.
· The coordination and execution of
an intensive 3 day media campaign
with HeartKids Victoria to advocate
for the plight of the many families
that were having their surgery cancelled
due to the shortage of services
at the Royal Children’s Hospital in
Melbourne. I commend Kerry on the
fantastic job she did in organising
the campaign at such short notice,
and I thank Lisa Guy and her family
for allowing us to share their story as
part of that campaign.
· Last but by no means least, the appointment
and presentation at the
AGM, of our inaugural Patron Dr.
Gavin Wheaton. As I am sure you
would agree Dr. Wheaton is a most
perfect candidate for this particularly
important role within HeartKids SA.
Going forward, HeartKids SA needs
to focus on the following to ensure
that we are able to sustain the fantastic
growth of the last 12 months;
· Revision of our strategic plan to account
for our growth over the last 12
months and our planned growth for
the coming year,
· The development of a Support Plan
that not only outlines our support
programs as of today, but what we
envisage they will be in five years
time,
· The expansion of our support services
to ensure that the same level of
support is available to all families at
all times in both metropolitan and
rural areas,
· Build on the Financial Support
Fund to enable its expansion to cover
more than just the accommodation
costs incurred by families that need
to travel for treatment,
· Build on the fundraising success of
the past 12 months, to enable the
organisation to fund the planned
growth for the coming year,
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4
· Review and update our Constitution
to enable us to recruit people
from outside our organisation to
help us manage and grow the organisation.
I would like to thank a few people
who have left the committee during
the last year. Firstly, Rowena for her
wonderful contribution and tireless
efforts in supporting our organisation
and families over many years.
I would also like to thank Michael
Bails, Jo Oldman and Jacqui Mifsud
for their contributions as they will
not be sitting for the 2008/09 committee.
Michael has been instrumental in ensuring
that our committee practices
were correct, and has especially been
an integral part of managing our
growth over the last twelve months.
Even though Michael has left the
committee, he will continue to work
with us as we revise our constitution
over the coming months. Jo has
brought her experience of working
for other non-profit organisations
to the HeartKids committee which
has been invaluable and she will be
sorely missed. Jacqui only joined the
committee twelve months ago and
took on the role of producing the
newletter for which she has done an
absolutely fantastic job. Even though
Jacqui is leaving the committee, she
will continue to produce the newsletter
and maintain the website for us.
I would also like to recognise and
thank Tim and Tarnya O’Neill for
their contributions that included
their Special Zipper campaign to
raise money to support families that
need to travel to Melbourne, their
efforts in establishing the Events and
Fundraising Sub-committee at the
start of the year and Tim’s assistance
in our transition to our new website.
On behalf of the committee and the
many families that will ultimately
benefit from their work, I thank you.
On that note I would like to introduce
the newest members to the
HeartKids SA committee.
I would like to welcome Nicole Carter
who joins the committee as a representative
for the regional groups.
Nicole has done a fantastic job of
raising the profile of HeartKids in
the Whyalla region over the past
twelve months, and her input will be
a key part of expanding our support
services to the regional areas. I would
also like to welcome Dawn Lamont.
Dawn has taken on the role of the
committee secretary and has extensive
experience in the not for profit
sector, having been involved with the
Australian Down Syndrome Association
for many years.
Finally I would like to thank the
2007-2008 Committee, Kerry and
Kylie for their exemplary commitment
and contribution over the last
year. Without your support, hard
work and dedication we would not
have been able to achieve what we
have achieved.
Matt Turner
Chairman HKSA
Thankyou!
Rowena and Michael being
presented with gifts for
their services to HeartKids
SA at the AGM
Three Generations of Heart ‘Kids’!
Dr. Michael Betts, who claims to be the oldest
heart kid in SA at 62 yrs of age, Glynn Morgan
aged 19 yrs and guest speaker at the HeartKids SA
AGM, Christie Anthoney, Adelaide Fringe
Director, at 39 yrs of age.
AGM
Thanks to all who attended our
recent AGM. We all gretaly enjoyed
the presentation by adult ‘heartkid’
Christie Anthoney, Adelaide Fringe
Director, and we appreciate her sharing
her insight into growing up and
living with a heart condition.
Sponsorship of HeartKids SA
HeartKids SA are seeking sponsors for a range of different needs that our organisation has.
If you can help please contact Kerry on 0420 363 155 or kerry.southwell@heartkids.org.au

MATTERS OF THE HEART - STATE MANAGER’S REPORT
There have been so many fantastic
highlights for HeartKids SA since
our last newsletter.
Please find below a few, in no particular
order:
The City-Bay Fun Run which exceeded
all fundraising expectations.
A big thank you to IKEA for the
caps and t-shirts. Thank you also to
all of those who participated, donated
money, gained sponsorship and
donated to the goody bags. Thank
you to the HKSA Events & Fundraising
Sub Committee for making it
all happen.
Kylie Bath and I travelled to
Whyalla to meet all the wonderful
HeartKids families who live there.
PATS increase, annual funding for
HKSA (which is very unlikely at this
stage) and the paediatric heart surgery
cancellations at Royal Children’s
Hospital, Melbourne.
Media Campaign centred on the
heart surgery cancellations at the
RCH. We appeared on the Channels
7, 9 (national) and 10 News, The
Advertiser featured a story, and interviews
were aired on the ABC Radio
891 and Radio 102.3. Thank you
to those families who so willingly
shared their stories with the media.
Kiwanis donations towards HKSA
Bridle Bear Christmas Cards.
Thank you to Sue Bridle for her
beautiful artwork.
our brand. It was terrific to meet our
counterparts from the other states.
My vision for HKSA is to secure
funding so that we may offer the
support mechanisms needed for our
children and their families. Hence,
since the last newsletter I have written
nearly $100,000 worth of grant
requests. I know that we have been
successful for one, but can not publicly
announce it yet, which is exciting!
Kerry Southwell
State Manager.
We are thrilled to have Nicole Carter,
(far right) as Whyalla Regional
Representative on the HKSA Committee
to give our rural families a
voice.
We met an indigenous nurse
through Jeanette Cowan, Indigenous
Education Adviser, Whyalla TAFE
who has agreed to distribute HKSA
information to our rural and remote
indigenous communities.
Visiting Mt Gambier to meet
our Regional Representative Angela
Hein.
Establishing a HKSA Travelling
Fund to assist our families with accommodation
costs.
Dr Gavin Wheaton, becoming
HKSA’s inaugural Patron.
Community Benefit SA funding
of $7,700 to purchase a much needed
photocopier. A big thank you to
Community Benefit SA.
A meeting with Minister John
Hill, State Minister of Health re:
We have a great team of people
at HeartKids SA and my heartfelt
thank you to all of those who assisted
in making the above happen! I
was also privileged along with Matt
Turner, Lee Morgan & Kylie Bath
to attend the HKA Conference in
Brisbane in September. In summary,
HKA will commission a White Paper,
complete brand and positioning
strategy, install a database and step
up national fundraising. The State
organisations will instigate a new
membership policy to ensure we
record details of all HeartKids families,
actively recruit to build depth in
our boards and committees to reduce
reliance upon individuals and increase
the level of strategic thinking.
We will build up our networks of local
sponsors to ensure ongoing financial
security and be conservative with
our fundraising to ensure sanctity of
Harry and Harriett
Claire Kerr’s Harriett Bear recently
accompanied her on her
Make-A-Wish
holiday trip to Hawaii!!!
Claire was keen to surf the waves in
while Harriett relaxed and
enjoyed the sun!
Tell us where you have been with
your Harry or Harriett!
Send a message and photos to
kylie.bath@heartkids.org.au
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IKEA Movie Night
This event was a great success and
almost 300 people enjoyed the movie,
Get Smart. Following a couple of
speeches we were all moved by the
Butterflies DVD presentation about
the journey faced by CHD children
and a speech delivered so confidently
by heart transplant teenager Claire
Kerr. Thanks to IKEA for organizing
the event and for providing free
tickets, drinks and popcorn to our
HeartKids families and for presenting
us with a $2000 cheque.
Lion Hotel Charity
Gourmet BBQ’s
These continue to be a great source
(excuse the pun) of much needed
funds. The Chef cooks the BBQ
under the verandah out the front
and the generous patrons of the Lion
Hotel are more than happy to buy
a Barossa Kranski or simply make a
donation and to find out a bit about
HeartKids SA. Thanks to Robbie
from Cardiology who has become a
regular helper on each occasion and
always does a magnificent job. We
would love to have our HeartKids
members come down and enjoy the
BBQ. Bring along some friends or
even the whole office for a drink after
work!
Scrapbooking
Fundraiser Workshop
Thanks to Kristie Green who held
a very successful Scrapbooking
Workshop with the funds raised for
HKSA. Many people have been asking
when the next one will be! The
batten has been passed to Kate Mason
who will hold a workshop in
November.
Harry Potter Postponed
Harry Potter is now going to be released
in July 2009. We will endeavour
to reschedule our Movie Night
for that next year.
Fundraising, Awareness and Events
Diary Dates
Sunday October 26th
Celebrate Sunnybrae! Sunnybrae
Farm, Gallipoli Grove, Regency
Park. 9am - 4pm
Friday October 31st
Lion Hotel Gourmet BBQ
5:30 - 7pm
Saturday November 1st:
Bunnings Munno Para BBQ
Sunday 23rd November
Scrapbooking Fundraiser
9.30am - 4.30pm
Sunday 30th November
HKSA Christmas Picnic
Our annual Christmas Picnic for
HeartKids Families will be held again
at St. Andrews School, Walkerville.
Please see the invitation flyer
included with your newsletter.
January 23rd - 26th
HeartKids Australia Teen Camp
Donations
THANK YOU to those who have
recently donated to assist us in our
fundraising and awareness efforts:
IKEA Adelaide
PFA Promotions
The Teddy Bear Corner
Jurlique
Lisa’s Chocolates
Rachael Frackowskis mints and
Maggie Beer goods
Sue Puddy at United Water
Kane Stoddard at
Constellation Wines
Kathy at Balloons Galore
John and Anne Hornby
Money Options
Kiwanis Club of Glenelg
The many Kiwanis Clubs around SA
who contributed towards the costs of
printing for our brochures
A Day At Sunnybrae
The Enfield & Districts Historical
Society presents an open day at Sunnybrae
Farm, Regency Park, with
the intention of developing community
awareness of historic Sunnybrae
Farm, with its four and half
acres of beautiful lawns, trees, rose
garden and heritage buildings which
includes Sunnybrae Function Centre
and the Enfield Heritage Museum
displaying the way of life from the
1880’s to recent times.
We will have a gazebo and tressle table
at this event and will sell the new
merchandise which has arrived and
looks fabulous! Our stall will give out
information, sell merchandise, have
a ‘Teddy Bear’ raffle, give out helium
balloons as well as HKSA balloons,
and brochures etc. available and answer
any general questions about
HeartKids SA and Childhood Heart
Disease.
Scrapbooking
Fundraiser
Sunday 23rd November
Corromandel Community
Centre, 9.30am - 4.30pm
Entry $15 [tea/coffee provided]
Bookings essential
For bookings and more info,
phone: kate - 0400 293 428
or naomi - 0408 838 391
kate.mason@optusnet.com.au
ideal@chariot.net.au
All proceeds going to HKSA

City -Bay
Sunday Mail City-Bay Fun Run.
WOW!! What an amazing response
we had to this! A total of 169 people
signed up to participate for Heart-
Kids SA, led by Lee Morgan who
ran his 34th City-Bay, all proudly
wearing t-shirts and caps generously
donated by IKEA. We ended up
with groups of people entering each
of the sifferent sections of the race.
Each person received a ‘goody bag’
of products donated by generous
businesses and individuals and Kane
Stoddard at Constellation Wines donated
the funds to purchase 10 huge,
red, foil, heart shaped, helium balloons
which drew plenty of attention
as they moved through the crowd
– which was the whole point of the
day – to raise awareness of HeartKids
SA and of Childhood Heart Disease.
And, as if that wasn’t enough,
a number of people got behind our
fundraising efforts by setting up their
own fundraising web pages on the
Everyday Hero site or by gaining
sponsorship through friends, family,
and work colleagues. The total from
the efforts of these dedicated people
has now reached $16000 and we
are still receiving online donations.
What an amazing effort by everyone
involved! Everyone had a great
time on the day and we are hoping
to have 300 people participate for us
next year. And with that many people
involved, who knows how high
the fundraising could go! Thanks to
our fundraisers:
Lisa Guy and family
Lucy Cornes
Kathryn Pearson
Prisca Harrison
Callum McNair
Cathie Turner
Rachael Frackowki
Lee Morgan
Kylie Bath
Carly Nash
Mick and Rebecca Blunn
Kerry Southwell
Tim O’Neill
The Highgate Honey’s
Heather Round
Glen Coppock and family
Jody Seelander
Nicola Barrows
Chris Leske
Ann Kanongata’a
Ursula Kawalec
Martin Lucas
Asta Gehling
Kids Around Town
This handy A5 sized full colour glossy book is filled with over 230 vouchers
offering freebies, 2 for 1 offers, 10%-25% off and more!!
Not only does Kids Around Town offer financial savings & prizes, it is also a
handy guide to what can be found in & around Adelaide for families.
Order you book through HeartKids SA for only $28!
$10 from every book sold will stay with HeartKids SA, raising
much needed funds for our Family Support Program.
See the information and order form accompanying this newsletter
or visit www.heartkidssa.org.au
7

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The last couple of
months have again
been very busy both
in and out of the
hospital. We have started our new
Southern Playgroup which is great
for both the children and the Mums,
especially the $3 coffee and cake
provided by the Church Cafeteria!
The coffee mornings in the hospital
continue to be a lot of fun with some
very special birthday celebrations.
We also often have a surprise visit
from Captain Starlight who never
fail to entertain us with their beautiful
puppets and magic shows.
Our Teenage Pizza Showdown was
also a great night – Thank You to
those who braved the storm to come
and join us at the Largs Bay Sailing
Club, who kindly donated the use
of their room to us for the night. A
very big Thank you must also go to
Rupert Sapwell and Jacob Holmes
from the Adelaide 36er’s and to Brett
Duncanson (the new Port Power
President), Troy Chaplin and Steven
HeartKids Counselling
In times of crisis or need HeartKids has
a counsellor available for short term
counselling. Our counsellor is Janette
Hall. Janette has a Masters of Social
Science (Counselling) and is also a registered
nurse specialising in Intensive
Care Nursing. She also works in private
practise as a counsellor and has her
own heart kid, James, who is 15.
This service is obtained through a referral
via Kylie Bath, or through the
HeartKids committee. Referrals are
handed over to Janette who will then
ring you to arrange a time for a convenient
counselling session which can
be by phone, or face to face counselling
can be arranged.
This service is in addition to the health
professionals available through the
governmental health system. Medical
questions should always be addressed
to your medical doctor.
Please contact Kylie Bath for
further information.
Family Support Coordinator Report
Salopek from the Port Adelaide Football
Club who gave up their own
time to come and help make our
night a success. Thank you also to
Balfour’s who kindly donated Crow’s
and Power Showdown donuts which
provided many laughs and much
mess in the no-hands, hanging donut
eating competition!!
Kerry and I were invited to go to
Whyalla and meet the many Heart-
Kid families living over there. It was
simply amazing to see the level of
support that they provide for one another
and the fantastic job that they
are doing raising money and creating
an awareness of HeartKids in
Whyalla!
While Wendy, myself and 23 kids
were pigging out on Pizza, playing
pool and trying to complete a Tetris
Cube, their parents were being wined
and dined across the road at the
Largs Pier Hotel.
I have also been to Brisbane to attend
the HeartKids Australia National
Confernce, which was a great
opportunity to meet all of the other
FSC’s from other states, and to share
our ideas and experiences.
Lastly, to all those of you who have
had recent stays in hospital and visits
to Melbourne, I hope that you are all
on the road to recovery. I have met a
lot of new families over the last few
months, and it is great to be able to
get to know you and your children.
Please remember that you can call or
email me at anytime, and if you are
visiting the WCH from the country
or The Northern Territory,
please let me know if you
need a visitor!
Kylie Bath
HEARTKIDS AUSTRALIA
TEEN CAMP JANUARY 2009!!
Come along and enjoy the fun and games!
See old friends, try something new and meet
someone different!
Campaspe Downs Country Resort,
Kyneton, Victoria.
See the Registration Form for more details.

HeartKids Australia News
As we draw near to the anniversary
of the beginning of operations
for HeartKids Australia I thought I
might share with you some of the
feedback I have received from families
benefiting from the special services
provided by our Family Support
Coordinators and programs that are
provided by HeartKids.
I find great inspiration from receiving
these types of letters. They demonstrate
the importance of what we
do and drive us to expand and further
develop our services to ensure all
families affected by heart disease can
receive similar support.
I am a parent of a little boy with Aortic
Stenosis who is just 4 months old. I
would just like to say thankyou for the
support we get from our local Heart-
Kids Family Support Coordinator.
She is just so great. She is pleasant and
listens to our problems. She tries to help
us with your worries and has been the
best support. We have been in hospital
3 months and she always comes and
makes sure we are ok.
We really appreciate the support and
the work you are doing to raise money
for sick kids like my son and for research
into children’s heart disease.
Words can not explain it.
Thankyou HeartKids – keep up the
great work!
Dear Neil,
Recently, we lost our niece of only
8 weeks old due to two holes in her
heart. Her condition was not diagnosed
at birth and as a result of flying
this ended up impacting on her life.
At her funeral we managed to raise
$800 for your charity. Since her death
we have learnt a lot about children’s
heart disease and of your special charity.
Having learnt of the prevalence of
children’s heart disease and of the significant
needs and with some time on
my hands, I would now like to offer my
services in any way to assist you with
your work.
I was recently asked to show how
donations of different denominations
could assist HeartKids. Below is
just a sample of the many things that
would benefit from donations made.
$50 Fund a morning tea for families
needing support and reassurance
during these most difficult times.
$100 One night’s accommodation
for a family travelling to a capital city
for treatment.
$500 Fund the costs of employing
a Family Support Coordinator for a
week to provide much needed support
to the families.
$1000 Fund the costs of a researcher
for a week with the hope that in
future less children will be born with
CHD and that mortality rates will
decrease.
HeartKid of the Month
We recently activated a new feature
on the HK website – HeartKid of the
Month. You are invited to visit the
‘latest news’ section in the site and to
read about beautiful Makayla Tyrrell.
If you would like your child highlighted
as HeartKid of the Month
email me at: neil@heartkids.org.au
Neil McWhannell
CEO HeartKids Australia
Max’s Place
Max’s place are units that Heather & Tim
Round have purchased in dedication to the
memory of their son Max - the units are for
the use of families that have to relocate to
Melbourne for life giving surgery for
CHD children.
Max’s Place are one bedroom apartments, with
a kitchen, living room and bathroom and are
located directly opposite the
Royal Children’s Hospital, Melbourne.
For more details, please contact
Tim or Heather 0400 508 139 or
(08) 8555 0708 or visit www.heartsofhope.
iinet.net.au/homepage/max.html
RCH NEWS
MELBOUNRE
The State Government is building a
brand new home for the Royal Children’s
Hospital, right next door to
the current site on Flemington Road.
Have you had a look at the website
of the new hospital project
www.newrch.vic.gov.au/
One of the features is the webcam
– you can have a bird’s eye view of
the construction site via the webcam.
The images are updated every 15
minutes, day and night.
• Work to construct the new RCH
started at the end of 2007.
• Digging for the new 2000 space
carpark involved removing enough
soil to fill around 116 Olympic size
swimming pools.
• Strict rules are in place to reduce
the impact of things like dust, noise
and vibration during the digging and
building for the new RCH.
• 420 piles (columns of concrete)
have now been placed in the ground
to provide foundation support for
the new building.
• The zig-zag outline of the inpatient
building can be seen towards the
back of the construction site.
• The 2 cranes which have now been
erected have been named after longterm
patients at the hospital.
• There will be 6 more cranes erected
later this year.
• The new RCH will be completed
by the end of 2011.
Once the RCH has moved, much of
the existing hospital will be knocked
down and reinstated as parkland.
This will be completed in 2014.
article and photo courtesy of HKVIC
9

Velo-Cardio Facial Syndrome
10
Not every tadpole can type!
Clever people don’t buy x-lotto tickets
because they know the odds of
winning are only marginally higher if
you actually go out and buy a ticket;
they probably also think that that
kind of luck just belongs to a few.
What they overlook is how lucky we
already are just to be us.
The sperm that met your mother’s
egg was around 1473 times more
likely to have won X-Lotto than the
gold medal in the short course freestyle
swim that led to your conception.
It was a lucky break for that little
tadpole, the odds of you being you
with your own unique sequence of
genetic code is nothing short of a
miracle.
As with many athletes our gold
medallist tadpoles (or eggs for that
matter) might swim well but sometimes
they just can’t type to save
themselves. So some of us end up
with what are essentially typos in our
DNA.
A lot of these hiccups in our genetic
code are completely benign, they
don’t get noticed because they have
no noticeable effect but then there
are others with more serious and unexpected
consequences.
In some cases a DNA typo leads to a
genetic heart defect. The parents of
some HeartKids may have noticed
that the heart condition is just one
part of an unexpected gift set that
included other health surprises and
curiosities.
These unwanted coffret’s can sometimes
point one of many common
DNA typos collectively known as
genetic disorders.
Spotting a disorder brings mixed
emotions for a parent. It is a rule that
they are never given attractive names
and they almost always end with the
dreaded “S” word.
The word Syndrome itself is harmless,
it means nothing more than a
pattern of symptoms or features.
If you were Swedish your parents
would probably have been thrilled
to hear doctors confirm you had the
blue eyed blonde haired syndrome.
They may have felt quite differently
however if the doctors lead with an
apology and said it was Downs, Long
QT or one of the many hundred for
which science has applied an unattractive
name.
Diagnosis however isn’t a bad thing.
For parents and health care providers
an early diagnosis creates the opportunity
for early intervention – not
only is knowledge power, knowledge
represents hope.
Coincidentally Knowledge is Hope
is the catchphrase of the Velo-Cardio
Facial Syndrome Educational Foundation
Inc.
Most readers are unlikely to have
heard of the condition; Yet Velo-Cardio-Facial
Syndrome (VCFS) is second
only to Down’s as the most common
genetic deletion syndrome and
it affects more children (1 in 2,000)
than Fragile X, Muscular Dystrophy,
Cystic Fibrosis, or Haemophilia.
“Not only is
knowledge power,
knowledge
represents hope”
The condition itself is complicated.
It varies between patients but is often
manifest in a combination of feeding
problems & issues with the soft palate
(hence Velo), a heart condition
(often but not limited to IAA, TOF,
VSD) hence Cardio and a couple
of similar facial features that are not
much on their own but if you put
the patients together in a room you’d
probably think they were related–
hence Facial.
In all, there are about 180 symptoms
of varying severity that can be associated
with the condition.
Unlike Down’s VCFS isn’t all that
easy to spot just by looking at a person,
but it can be readily detected by
a blood test (FISH). Until recently
its prevalence was not well understood
and regrettably many patients
who have the deletion have never
been tested or diagnosed.
This is unfortunate as evidence in the
US indicates that the majority (90%)
of VCFS patients will need specialized
educational programming. They
tend to struggle with cognition,
speech and language, fine/gross motor
issues and many will even go on
to need tailored support as they transition
into adulthood.
Early intervention and specialized
programs can make a big difference
in helping people with VCFS reach
their full potential, though parents
with the support of their health care
providers often need to drive this
as school personnel generally are
unfamiliar with VCFS and are not
trained to work with students who
have the condition.
Should you have questions or concerns
about VCFS in the first instance
you should raise these with
your paediatrician or cardiologist.
Reliable information on VCFS, the
Education Foundation and its work
can be found at www.vcfsef.org.
SA families affected by VCFS who
are interested in meeting others with
shared experiences should contact
HeartKids of SA.
Michael Bails
To Our Volunteers:
“Actions and words are
the windows through
which the heart is seen.”

Inspirational HeartTeeen Claire Kerr
Claire connected to her LVAD
Hi my name is Claire Kerr and this
Is my brief story. In November 2006
at the age of 14 I became very unwell
and eventually our GP sent me to
the Women’s and Children’s Hospital
to be checked out. On the 13th of
December 2006 after having various
tests in emergency I was sent for a
chest x-ray and this showed that my
heart was very enlarged and I had
Dilated Cardiomyopathy.
I spent the rest of December including
Christmas day in PICU (Pediatric
intensive Care Unit) taking many
drugs to try and shrink my heart.
At the end of January 2007 I went
over to the Royal Children’s Hospital
Melbourne for a week to be assessed
for a heart transplant because
the tablets weren’t working anymore.
My condition deteriated so I wasn’t
allowed to go home and on the
13th of February I underwent a 7
hour operation to be connected to
a LVAD (left ventricle assist device)
or theoretic and was connected to
my left ventricle. I had to go back
to theater a further 3 times to have
fluid and blood clots removed from
around my heart. I was the fourth
child in Australia to go on it.
By now I had gone down to 39kg
but the machine was helping to
keep me alive. In June of 2007 I was
transplanted with a new heart from
a generous donor and without this I
would have eventually died.
After staying in Melbourne for a further
3 months, in September 2007
I was finally allowed to go home. I
spent a total of 8½ months in Melbourne.
My mum and dad (who ran
his own business) had to give up
their jobs and my elder sister had do
year 12 studies by correspondence.
I returned to school for the last two
weeks of term 3 and term 4 2007
and started playing district basketball
at under 18 division 2 level.
In December 2007 I had to get
my tonsils removed four days before
Christmas because what at first
looked like a benign tumor on the
tonsil turned out to be cancerous and
I was diagnosed with Non Hodgkin’s
Lymphoma. This was caused by the
immune system being suppressed
after transplant.
I am now in remission after lowering
my anti rejection tablets and not
having to have any chemotherapy.
My health is back to normal and everything
is going well.
NEW MERCHANDISE
Bridle Bear Christmas Cards Two
designs, $10 for a pack of 10 cards
Heart Shaped
Key Ring $5
Logo Pin/
Badge $4
Coffee Mugs $5
Term 4 dates:
October 21st, Nov. 4th, 18th, Dec. 2nd,
16th.
If you are able to sell
Cadbury Chocolates at
your club or place of
work please contact
chocolates@heartkidssa.org.au
or call 0406 165 111
WHYALLA
FUNDRAISING AND
SUPPORT GROUP
Logo Temporary Tattoos $3 for a
pack of five.
Purchase HKSA Merchandies at all
HKSA events, fundraisers and activities
including Coffee Morning and
Playgroup. Or contact Cathie on
0406 165 111
Get yours at the HKSA
Christmas Picnic!
Coffee Mornings
@ WCH
Term 4 dates:
October 14th, 28th, Nov. 11th, 25th,
Dec. 9th.
10am—12 noon
On the PLAYDECK at WCH.
Or if the weather is cold:
Women’s Physio Group Room
Will hold a meeting on the last
Saturday of every month,
at 2pm in the conference room at
Kafe Laguna Bar & Restaurant,
53a Playford Ave, Whyalla.
Family support session will
follow at 3pm. Please contact:
Nicole Carter
Whyalla Regional Representative on
0430 583 834
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