Inside this issue: - HeartKids SA

Quarterly Newsletter of South Australia and Northern Territory
WINTER 2011
Inside this issue:
Siblings of Heart Kids
Increased support for HKSA families
Free events for members
Alex Hudswell’s India
CHD White Paper
plus much more…
www.heartkidssa.org.au

Our Team
Our Team
Our Vision...
Life unaffected by Childhood
Heart Disease
Our Mission...
As the public face of
Childhood Heart Disease (CHD)
and through our
active partnering with the
medical community and
Government, Australia will
adopt best practice in the
intervention, treatment and
support for all those affected.
This will result in a reduction
of incidence, decreased
mortality, significantly
improved quality of life and
best outcomes for those
affected by CHD. This will be
achieved through our work in
support, awareness, research
and advocacy.
STATE MANAGER
Kerry Southwell 0420 363 155
kerry.southwell@heartkids.org.au
FAMILY SUPPORT COORDINATOR
Deborah Likouras 0451 126 766
deborah.likouras@heartkids.org.au
REGIONAL FAMILY SUPPORT
COORDINATOR
Nicole Carter 0450 100 433
nicole.carter@heartkidssa.org.au
ADMINISTRATION COORDINATOR
Sheree Hyde
sheree@heartkids.org.au
REGIONAL REPRESENTATIVES
Alice Springs 08 8958 2376
Shannon 0402 468 843
Bordertown 08 8753 2246
Sharyn 0428 585 602
Broken Hill 08 8087 9249
Kerri 0438 879 249
kerri.simmons@landmark.com.au
Crystal Brook 08 8636 2474
Genevieve 0427 362 474
Darwin
Jess 0407 973 318
Chris 0421 221 563
Port Lincoln
Heidi 0468 736 538
Ali 0427 663 587
Mt Gambier 0418 843 877
Angela 08 8726 6292
Whyalla
Nicole 0450 100 433
nicole.carter@heartkidssa.org.au
Yorke Peninsula
Marie 0400 068 779
HEARTKIDS SA BOARD 2010/11
Chairman
Bruce Harrison
Vice Chairman
Matt Turner
Treasurer
David Harrison
Secretary
Leonie McNeil
General Members
Rebecca Blunn
Damien Connor
Martin Hill
Mischelle Hill
Tim Round
PATRON
Dr Gavin Wheaton
AMBASSADORS
Graham Manou
Jacob Holmes
Lucy Cornes
YOUTH AMBASSADORS
Callum McNair
Emma Kerr
Contact Us
Contact Us
HEARTKIDS SA
PO Box 364
North Adelaide SA 5006
Phone: 08 8332 2901
mail@heartkidssa.org.au
Events & Activities:
Please ph. 0410 646 577
Visit Us
Visit Us
Visit Us
6 Watson Avenue,
Rose Park SA 5067
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)
2

Contents
Contents
1 Front Cover
Lara, older sister of HeartKid Jack, having fun at the
2011 Ikea Ball Room Party
3 From the Chairman
4 Matters of the Heart
5 City to Bay
6 Family Support
7 Siblings Australia
As a parent of a child with a heart condition, it can be
difficult juggling the needs of all members of your family.
8 Regional News
9 HeartKids Australia News
10 Cuppa for HeartKids
11 Alex Hudswell’s India
12 Opportunities to make a Difference
13 Recent Events and Activities
15 Upcoming Events and Activities
17 Diary Dates
18 Childhood Heart Disease White paper
20 Sponsors and HKSA Supporter Form
From the Chairman
From the Chairman
Dear Friends
It’s hard to believe that the year is already half over. The older you get, the faster it
seems to go (which means that in my case, the years are flying!).
The HKSA Board recently met with the HeartKids Australia Board to discuss their
strategic plan and learn of their plans for the future. This was extremely useful
and they were suitably impressed by what is happening in SA.
We are the first State to appoint a Regional
FSC and, with the recent appointment of Deb
Likouras, for the first time we have a presence in
Flinders Medical Centre. This is a wonderful step
forward as we seek to provide additional support
for our HeartKids and their families.
We have also introduced a meal voucher support
program for our families that travel to Melbourne
as well as increasing the funding from the Travel
Assistance Fund from $120 to $300 per trip for
our families that incur out of pocket costs when
travelling to the RCH and for families from the NT
and SA country travelling to the WCH.
The support of our HeartKids and their families
is our number one priority and, through recent
fundraising efforts and the fantastic support from
our sponsors, we are in a position to continue to
improve our levels of support.
Support though is more than just providing
additional funding and we are fortunate to have
many wonderful volunteers that assist in meeting
our social, emotional and other support needs.
The HeartKids Events Committee are part of the
unsung heroes by meeting monthly and planning
events such as the first aid sessions, parent
information nights, the Beachouse event, the
Christmas Picnic etc. To the Committee members,
our Playgroup Co-ordinators and all of our many
volunteers that give up their time to help, a very
big thank you.
In closing, I would like to thank the families at
Port Augusta and Whyalla that Christina, David,
Prisca and I (together with Brock, Chelsea and
Lewis) met in the week before Easter. It was a
pleasure to meet with you and learn more about
what it means to be a HeartKid family in rural SA.
I continue to be amazed by the courage,
strength and concern for others that each of
our HeartKids and families display. You are
an inspiration to all who come to learn the
HeartKids story.
Best Wishes
Bruce Harrison
HeartKids SA Chairman
3

Matters of the Heart
Matters of the Heart
Here I am sitting in the Port Lincoln airport after spending
a wonderful weekend with our Regional Family Support
Coordinator, Nicole Carter and 3 amazing Whyalla Heart
Mums - all with the common purpose of supporting our
new Port Lincoln Regional Representatives, Heidi and Ali.
Thank you most sincerely for your warm hospitality. I found it very
humbling to meet our Port Lincoln families, learn of their journeys
of having a heart child and the unique issues they face living in rural
South Australia. I have come away determined to provide more
support to our regional families. If you live in the Port Lincoln region,
please give Heidi a ring on 0468 736 538, she would love to hear from
you!
Kylie Bath, Family Support Coordinator left HKSA in May after 3 years
of service. Kylie was instrumental in establishing the role of Family
Support Co-ordinator and building a relationship with the Women’s
& Children’s Hospital. We thank her for her years of service and wish
Kylie all the best for the future.
Helen Walker, who is Godmother to Heart child Ava, is this year
organising the HeartKids team for the City Bay. I encourage you
to enter. Thank you most sincerely IKEA for again being our major
sponsor for this superb event.
A warm welcome to Deborah Likouras who was appointed Family
Support Coordinator in March. I am pleased to report that not only
is Deborah working at the Women’s
& Children’s Hospital, but also at the
Flinders Medical Centre, attending
their Paediatric Cardiac Clinic every
second Thursday. Please make
yourself known to her next time you
are in the hospital.
Matt Turner, HKSA immediate
past Chair, has completed a
HKSA Support Plan. This 35
page paper documents the
key areas of support for HKSA
to implement. Staff, Board
members and families were
given the opportunity to provide input into this paper, which
is an excellent resource for our organisation and has identified
where best our fundraising dollar will be spent to provide the
best services for our families – thank you Matt!
Winter is well and truly upon us and unfortunately the usual
coughs and colds. I hope you and your beautiful children keep
well! Our playgroups adhere to a strict wellness policy, we would
love to see you there!
Kerry Southwell
State Manager
Quilts for HeartKids
Quilts for HeartKids
Thank you to all those involved with providing quilts for Heart Kids
travelling to Melbourne for surgery.
Christina Howell has been instrumental in our quilting program, and we are now fortunate to have
quilting clubs including those from Whyalla and Yankalilla also coming on board to support this
wonderful initiative. Thank you also to Bronny Maywald and Anita Bellon for their help in making
this happen.
TAF & Meal Vouchers
TAF & Meal Vouchers
Are you travelling to Royal Childrens Hospital (RCH) in Melbourne?
Please contact Deb (0451 126 766) or our Regional Family Support Coordinator Nicole (0450 100 433) to organise your RCH Café Meal
Vouchers.
The Travel Assistance Fund (TAF) has also been increased to $300 to help toward your accommodation expenses.
Max’s Place
Melbourne
www.hearts-of-hope.com/maxplace.html
‘Max’s Place’ are one bedroom apartments
located directly opposite the
Royal Children’s Hospital in Melbourne.
For more details visit us at our website. or contact
Tim 0400 508 139
4

Are you going to be part of this year’s
HeartKids City-Bay team?
Mark your calendar for the morning of Sunday 18th September &
start training now!
Help us make HeartKids the biggest City-Bay team for the second
year running - we want 1000 participants in 2011!
For being part of the team, you’ll get your team t-shirt and other
team regalia - not to mention the tasty team breakfast waiting for
you at the finish line!
This year, we’d like you to register for the team online. Registration
is open now. Go to www.heartkidssa.org.au & follow the City-Bay
registration link to join the HeartKids team (we have hard copy
registrations for those who don’t have internet access, please
phone 8332 2901)
Help us beat last year’s fundraising efforts of $50,000 - start your
fundraising now
proudly supported by
5

HeartKids Family Support
HeartKids Family Support
Hi everyone,
My name is Deb Likouras, and I am HeartKids SA’s newest Family Support Coordinator.
I am married to Angelo, and I have two children, Elias who is almost
4, and Suzannah who is 18 months old. Suzannah is our precious
Heart Kid. She has had a tough start to life, arriving 8 weeks
early and having a number of health issues, including congenital
heart disease. Suzannah has Noonan Syndrome, and has been to
Melbourne for a cardiac catheter. She was also completely tube fed
until February this year, so it has been a challenging, but rewarding
journey.
I am a social worker and have worked predominantly with
young people who are in alternative care, juvenile detention, or
homeless. The Family Support Coordinator role is a very different
one for me, but is something I am passionate about and know I will
really enjoy. It has been really exciting to have met many Heart Kid
families during my first couple of months here - everyone has been
so welcoming, supportive and helpful! It was excellent to go along
to the Mother’s Day Breakfast and the Playgroups where I’ve met
so many amazing Mums, Dads and Heart Kids - I look forward to
meeting many more as time goes by!
I am also really excited about the roll out of our new “Heart Beads”
program across the WCH and FMC. More info to follow soon...
At this stage I will be
at the Women’s and
Children’s Hospital during
out-patient cardiology
clinics on Tuesdays,
Friday mornings and
every second Thursday
afternoon. On the 1st
and 3rd Thursday’s of
each month I will be at
Flinders Medical Centre
in the paediatric clinic
where the cardiology clinic is held.
Please feel free to give me a call if you will be at one
of these clinics. I would love to catch up for a chat or a coffee, and to
provide support to families where I can. I am also available to visit you
or your family if you are ever staying in one of the hospitals.
I hope to see you soon!
Deb Likouras
Family Support Coordinator
0451 126 766
CareBags
CareBags
In June a wonderful group of volunteers come into the HKSA office for a working bee to put together CareBags
for families travelling to Melbourne for surgery.
A lot of behind the scenes work was done prior to this so that the bags could be filled with a variety of items to help our families during their time in
Melbourne.
Special thanks to Prisca Harrison, Rachael Martini, Karen Horsell, Natalie Halls-Jones, Beck Blunn, Stacey & Malcolm Wright, Jill McNair, Bronny Maywald,
Kylie-Ann Lane, Terissa Lane, Sharyn Lane, Betty Peng Wang, Emma Kerr and all those involved in this special project. The CareBags will be
launched soon – stay tuned!
Anniversaries
Anniversaries
We are thinking of all families whose
loved one’s anniversary falls at
this time, including the following
heart angels:
Hayden James
Ebony-Rose
Connor Gore
Remembering Our Heart Angels
Remembering Our Heart Angels
We send our thoughts and prayers to the families
who are grieving the loss of a heart child,
especially, at this time, the family of
Elle Hillman
27.03.2007 – 31.03.2011
An invitation to the families of our treasured Heart Angels.
Please join us in remembering these precious children and
celebrate their lives together. Morning tea is held each month.
Please contact Deb on 0451 126 766 for more details.
6

Siblings Australia
Siblings Australia
As a parent of a child with a heart
condition, it can be difficult juggling
the needs of all members of your
family. You may be dealing with a
range of mixed emotions about what
is happening. And it is likely that the
brothers and sisters of your child with
special needs will also have a mix of
feelings and experiences.
The benefits of support
If you are able to support siblings they are likely to
develop stronger self-esteem, and feel more able to
deal with any challenges that come their way. They are
also likely to develop a stronger relationship with the
child with special needs. In fact, family relationships in
general are likely to be stronger.
Concerns of siblings
Brothers and sisters of children with special needs with
chronic illness may face a number of challenges. As a
result they may:
• Lack understanding about the illness
• Develop various fears and anxieties
• Feel isolated and confused
• Feel resentment if a brother or sister receives more
attention or is allowed to behave in ways they’re
not
• Experience shame about any negative feelings
• Feel they need to achieve, to be the ‘good child’
• Feel guilt over their own health and abilities
• Feel like they have extra responsibilities
How might these concerns affect my children?
If your children don’t have a chance to talk about
their concerns, their feelings may turn inward leading
to withdrawal, anxiety, or lowered self-esteem. Your
children may ‘act out’ their feelings with aggression
and attention seeking. They might develop sleep
problems or physical complaints. They may also have
social difficulties.
Siblings need:
• Information about the illness
• To feel listened to and understood
• Opportunities to express a mix of feelings
• To feel special themselves
• To feel competent and valued
• Not too much responsibility
• Strategies to deal with difficult situations
• Contact with siblings in a similar situation
• Social support
Most children will cope better with stress if they
feel listened to, understood and supported by caring
adults.
How can I help my children?
Many factors affect how a sibling adjusts. However,
children’s reactions are most influenced by the
responses of people around them, especially you as a
parent. In order to support your children try to:
• Find support for yourself- both emotional and
practical
• Give children information about the illness
• Listen to your children and acknowledge their
feelings
• Set an example by showing it is ok to share
difficult feelings
• Watch for behaviour that might indicate stress
• Help them learn skills to deal with difficult
situations
• Enable each child to feel special, spend ‘one-onone’
time with them.
• Acknowledge their contributions to household
activities but avoid giving them too much
responsibility
• Encourage children to have contact with siblings
in other families. Help them take part in a sibling
group or join an internet forum through Siblings
Australia
• Read books about sibling concerns – there are
a number on our website, including books for
children
Kate Strohm
About Siblings Australia
Siblings Australia is the only
organization in Australia to
focus on siblings of children
with disability or chronic
illness. They run workshops
for siblings, parents and
service providers all around
Australia and overseas, and
have developed a range of
resources and services.
Further information about
Siblings Australia can be
found on their website
(www.siblingsaustralia.org.
au) and Facebook page, or
by contacting Kate Strohm
kate@siblingsaustralia.org.au
/ 0408720558.
Siblings Workshops
If you would like HeartKids SA
to host a Siblings Australia
workshop and you would like to
attend, please contact Sheree
on 8332 2901 or sheree@
heartkids.org.au
7

Regional News
Regional News
Welcome to the winter regional news,
I hope you all had a lovely Easter and
Mother’s Day; my thoughts were with all
our families especially those in hospital
and our Heart Angel families over these
two special days.
Easter
Whyalla families were lucky to receive some special
visitors from Adelaide over Easter holidays, Christina,
Bruce, David & Prisca Harrison with their beautiful three
children. Dinner was held at Cafe Primo, the night began
with an Easter egg hunt, and the children had a great
time decked out in their whiskers and bunny ears.
Whyalla Musicians Reunion
Also over the Easter weekend 20 HeartKids SA
volunteers from Whyalla volunteered up to 13 hours
assisting with the Whyalla Musicians Reunion, this
event was open to the public and many bands travelled
from across Australia, to reunite back in Whyalla to
perform at the Westland’s Hotel. The event exceeded
expectations with over 1300 people attending
and $7500 was given to HeartKids to support local
cardiac children. Thank you to Ron Hay, Joy Rigg,
Brian Krawczyk and the Whyalla Musicians Reunion
Committee.
LEFT: Photo Courtesy of Whyalla News
Regional Events
Regional Events
July : SIDS & Kids Memorial Day
November: Bus Trip to Adelaide for the
HeartKids SA Christmas Picnic
October: Fantasia
Welcome!
Welcome!
Welcome Heidi & Ali!
Heidi & Ali have kindly put their hands up
to be Regional Representatives for the Port
Lincoln area. Heidi has a teenage daughter
and Ali has a two year old heart child. Ali was
previously our HeartKids contact in Roxby
Downs for two years and has now moved
to Pt Lincoln; she has been great support
to local families in Roxby. For support in Pt
Lincoln please phone Ali or Heidi for more
information. (see inside front cover for contact
details)
Mothers Day
Mother’s Day is a special day to celebrate our exceptional mums who have helped us along
our journeys and to celebrate ‘being a Mum’ and all you have achieved. We often speak
of the courage and strength of our heart children, but we don’t recognise the strength of
our incredible Heart Mums; Mother’s Day is the day to be shown how special you are. On
Mother’s Day our Heart Mums were treated to yoga, meditation, a facial, manicure, shoulder
massage, and a chocolate fountain with strawberries. It was one amazingly surreal pamper
day surrounded by great company. A big thank you to Julie at Divinely Guided therapies and
Joe and Jackie at Final Touch Beauty for making this special day happen.
St Johns Training
Over the last three months CPR sessions run by St John’s began across the regional areas in
Pt Augusta, Whyalla and Pt Lincoln. Many families took away basic CPR and first aid skills.
Families have been very grateful to HeartKids SA as they now feel more confident.
Congratulations!
I would like to send our congratulations to the Johnson family Brian, Emma, Zach and Heart
Angel Liam on the birth of a beautiful little girl.
A Big Thank You
I would like to send out a thank you to Alisa Camplins, for her amazing courage to share
Finnan’s journey on 60 minutes in May, and also thank her for being a voice for so many
families across Australia. A very moving story that touched so many hearts; our thoughts are
with her family at this time.
SIDS & Kids Memorial Service
We are very honoured to have been asked by SIDS & Kids to take
part in a regional memorial service in July this year, to be held in the
Whyalla Westlands Hotel. This is a time where families can reflect
and remember their baby, child or loved one. Please phone for more
details.
8

Regional News
Regional News
Pt Lincoln Visit
On June 4th Kerry Southwell, myself and three HeartKids’ volunteers and mums travelled to
Pt Lincoln to meet local families. We had a remarkable weekend starting with a CPR session,
followed by dinner and a family support session on the Sunday. A big thank you to Heidi
Rimland and Ali McDonald for all your hard work over the weekend. We look forward to Pt
Lincoln building support for their local families.
My thoughts are with you...
I am thinking of all families who have been in hospital over the last few months and those
travelling for appointments. My heart also goes out to the families who have lost their heart
child, and those whose child’s anniversary falls around this time, our thoughts are with you.
Please feel welcome to phone, where ever you are in your journey, if you are passing through
Whyalla please phone, it would be lovely to meet you.
Nicole Carter
HKSA Regional Family Support Coordinator
Ph: 0450 100 433
Darwin
Support Group
What - Cofee & Cakes
Where - 6 Emma Court Driver
When - First Friday of every month
Time - 9:30am to 11:30am
RSVP - Jess on
0407 973 318
HeartKids Australia News
HeartKids Australia News
Strategic Plan
Over the past few months the National Board and I have been working on a new
3 year Strategic Plan.
This was recently completed and subsequently presented to each State Board by our Chair, Brian E Pereira and our Vice
Chair, Dr Anne Fletcher. These meetings were well received ensuring we are fully aligned and that our goals are shared.
The Strategic Plan is an ambitious and exciting one for our organisation, as we work to build on the strong foundations
developed in recent years. We look forward to achieving the many goals and to further expanding our scope of work to
address the many needs of CHD.
Commonwealth Bank Community Seeds
Readers may be aware that HeartKids was recently selected as one of 6 charities to be part of
the Commonwealth Bank Community Seeds program.
We have been delighted with the response to this facebook voting campaign, which has seen HeartKids out performing all the
other charities.
We therefore stand to receive the lion’s share of the available pool of $150,000. It has also been most heartening to see the
wider HeartKids family unite as one for this cause. Details on the campaign can be found by visiting http://www.facebook.com/
commonwealthbank
See Page 15 for details on HeartKids Australia’s upcoming Seminar
Neil McWhannell
Chief Executive Officer
HeartKids Australia
9

Help in the fight against
Childhood Heart Disease!
Host a
Cuppa for HeartKids
throughout
August &
September
Register online at: cuppaforheartkids.org.au
10

Alex Hudswell’s India
Alex Hudswell’s India
Hi everyone!
So after twelve months of being
asked to write this story about my
trip to India, I have finally gotten
around to it...
On the 6 th of December 2009, I left on a month
long trip to India. For someone who was thought
of as lucky to make it to my first day of school
itself with my particular heart condition, it
seemed like quite the achievement. Not as much
of an achievement as getting through the pile of
forms for the insurance company though!
After flying through Singapore I landed in
Chennai. Here I went to an orphanage called
MITHRA. I worked with both physically and
mentally disabled children, helping to feed,
wash, clothe, teach basic English and of course
play modified games of cricket with the kids.
I stayed in one of the rooms there which
completely flooded when I had a shower and
experienced my first lot of ‘delhi belly’. It was
quite an interesting 9 days exploring India for
the first time.
From there I went to Agra to see the Taj Mahal,
which was every bit as spectacular as people
say it is. The constant layer of smog that coats
India did hamper some of the views though.
The Red Fort was also a sight to behold in the
sunset. Everything was going well apart from
when my bag carrying my camera, video camera
etc. got stolen. Spending two hours in a Indian
police station with people who aim rifles in your
direction is about as intimidating as going in
for a heart op! I then caught a train to Varansi
and had boat rides along the Ganga River, one
of the holiest places in the world. All of that
while watching traditional Indian dances and
ceremonies at the burning (cremating) gats.
After watching a traditional four hour bollywood
film called ‘Rocket Singh: Salesman of the Year’,
we caught a train to Hazaribag which has one of
the oldest Jesuit residences in India. Here I got
billeted out and stayed with an Indian family for
two days. Best Indian food ever! I then got sent
to a village called Larunga for Christmas Eve.
This was a village in the middle of nowhere with
no running water, electricity, and the toilet was
an open field with the occasional tree. I danced
all night with the locals after their Christmas
mass. After another five hour drive, I got back to
Hazaribag and then drove to the train station.
The train went to Kolkata. Here I worked in
Mother Teresa’s various homes. I worked in a
place called Prem Dan, which was a home for
those adults who had been rejected by society
due to their disabilities. This was a real eye
opener as I myself would have been there if
I was born into the Indian culture due to my
condition. That being if I would even survive
over there with such a condition. I then worked
in the home of the Destitute and Dying. Here I
saw people, mostly beggars who had been hit
by cars, or people that have been dumped by
their families who can’t afford treatment. Seeing
people with half a skull with their brain exposed
is not a pretty sight.
After experiencing a new year full of fireworks,
real street vendor chai tea and having dinner at
the one and only Blue Sky Café, it was time to
leave on the 4 th of January.
I think sometimes that I must be the one of
most fortunate children. Sure, I do not have
the worst heart condition out there and I’m
able to do most things ‘normal’ children else
can do, but knowing that if I was born in India
it would be such a different story. It makes me
feel privileged to live in a country such as ours. I
appreciate the resources we have here and the
abilities I have which so many others around the
world do not have.
This filtered through to my final years of school,
with me appreciating my education a lot more.
I was able to gain a great TER and get into a
double degree of Law and Psychology at the
University of South Australia. I have deferred
however, as I am currently in American working
in a summer camp for disabled children for 2
months. From here I plan to travel, come back
and complete my degree. I can’t wait to see
what the rest of this year holds!
Regards,
Alex Hudswell
11

Opportunities to make a difference
Opportunities to make a difference
Call Out for Volunteers!
HeartKids SA is fortunate to again be involved in the Channel 9
Telethon Distinctive Home and Land Lottery. This year’s beautiful home
is located at Freeling. We are seeking volunteers to be present at the
house open inspection on the following days between 1-5pm:
Monday 3rd October 2011 (public holiday)
Wednesday 5th October
Saturday 8th October
Sunday 9th October
Thinking of re-entering the workforce?
Want some recent office experience?
Volunteers for Dinner Service
Volunteers Welcome to join HeartKids in hosting a dinner for the
families staying in Ronald McDonald House. If you would like to help
cook and serve dinner on:
Monday 29th August – 5pm onwards
Monday 17th October – 5pm onwards
Proceeds of tickets sold at the house
on these days will benefit HeartKids SA
Please put up your hand to help us with
this wonderful opportunity!
HeartKids SA Office Volunteer
HeartKids SA are seeking a volunteer to help in their office located at Rose Park. If you
are able volunteer once a week or fortnight to help with general office tasks, please
contact Sheree on 8332 2901 or sheree@heartkids.org.au
Event Fundraising
Would you like to host your own event to help raise
awareness and support for HeartKids SA?
Please feel free to contact our office on 8332 2901
to discuss your idea and obtain a fundraising policy
form (this form can also be downloaded from
www.heartkidssa.org.au
HeartKids Merchandise
HeartKids Merchandise
Keyrings, Travel Mugs, T-shirts, Teddy
Bears, Pens, Coffee Mugs, plus more!
Please Raise Awareness & Support
HeartKids SA by utilising the great range
of products we have available.
Please RSVP your interest to 8332 2901 or mail@heartkidssa.org.au
Volunteers for 2011 City to Bay
Volunteers are also needed for the City to Bay – both in the lead up to the event, and on
the day (18th September). Please sing out if you can help
Phone Terissa on 0407 359 504 or visit
www.heartkidssa.org.au
Can you or your business help?
HeartKids SA are seeking donations of accommodation, holidays, jewelry,
service vouchers & hampers that can be used as auction items in upcoming
gala events.
We are fortunate to be involved in a number of events with Channel 9
Telethon throughout 2011. This includes functions such as the Restaurant &
Catering Awards, Melbourne Cup Luncheon and other gala events.
It is a wonderful opportunity to include items in the silent and live auctions –
not only does it provide promotion for the businesses and people who donate,
but 100% of proceeds from our items go toward HeartKids SA initiatives.
Please contact Sheree on 8332 2901 or sheree@heartkids.org.au
if you or your business can help. Thankyou.
Heroic Heart Kids Charity Auction
Elissa from Starr in the Skye Photography will be holding
another online auction in October 2011 to raise
funds for HeartKids SA.
For more details on how to donate auction items, or to
grab a bargain while supporting HeartKids SA, please
head to www.facebook.com/HeroicHeartKidsAuction
12

Recent Events and Activities
Recent Events and Activities
Mother's Breakfast
Sunday 15th May saw 40 wonderful Heart Mums and Heart Angel Mums gather for breakfast in the city.
Excellent food was shared and our fantastic volunteers prepared handmade lucky door prizes and goodies for
our Mums to take home. It was a great opportunity to connect with others that had been through similar
experiences and celebrate the joys and challenges of what having a HeartKid means. Thank you to all that organised
the Mother's Breakfast - RSVP's came in quick and filled quickly. It was a lovely morning with lots of laughter
and a great chance to meet new people.
Flying High
The Fun Flight was recently held at the Aldinga Aerodrome and gave our children
a wonderful opportunity to experience a flight in a light air craft. The weather was
perfect and the views were amazing as the pilots took us over vineyards, towns and
the gorgeous coastline. My children, Molly and Joshua thought it was fantastic counting
how many boats they could see in the sea and how tiny they were! We are very
grateful to all of the generous pilots who volunteered their time and planes to make
this morning possible and also to the Aldinga Aero Club for organising the event and
capping the morning off with a delicious sausage sizzle.
By Natalie Halls-Jones
Gumeracha Medieval Fair
The misty rain at the annual Gumeracha Medieval fair only helped to set the scene for another successful
community event in May 2011. HeartKids SA manned the information booth and took care of the washing
up for the Saturday night banquet, accumulating approx 65 hours of community volunteer work which over
the weekend saw a tidy profit of more than $900 going directly to HeartKids SA.
Thanks go to the merry band of volunteers, some volunteering for the first time for HeartKids. All were enthusiastic
and ready with a smile to answer any questions which came our way. We were especially thanked
by the fair co-ordinator who claimed that our services helped her immensely and added to the
professionally run event that was achieved. Well done everyone... See you next year.
Theresa Tucker
Beachouse School Holiday Fun
Monday 18th April 2011 saw a wonderful
gathering of over 70 children and their parents
for some fun at The Beachouse at Glenelg.
Our families enjoyed an hour of climbing, sliding, boating,
riding and more, followed by a relaxing barbeque on the lawns
with a visit from Patch the Lion. It was great to see so many
HeartKid families together to enjoy the start of the school
holidays and Easter. A special thank you to all of the HeartKids
SA and Kiwanis volunteers that were involved in the day.
13

Recent Events
Recent Events and Activities
Free
First Aid
Traning
Highgate Guides sparkle for HeartKids
The Highgate Girl Guides recently held a Sparkly night to
raise money to buy Harry the HeartKid Bears for our children
travelling to the Royal Children’s Hospital for surgery.
The girls conducted a ‘Sparkly Auction’ where the items up
for bid were mystery bottles beautifully wrapped in sparkly
paper and ribbon.
Thank you Guides for raising funds to purchase 17 Harry Bears
for our Heart children, they will love them!
Goodwood Saints Football Club
HeartKids SA would like to thank the Goodwood Saints Football Club and in particular Michael
Lawton for putting together 2 fundraisers this year on behalf of the club.
In February this year Lawts put together a 20/20 cricket game
between the footy club and the cricket club. The match was a well orchestrated
draw after allowing the footy club to bat for an additional 10
overs under lights on a cold windy night. HeartKids SA Redbacks ambassador
Graham Manou was invited however couldn’t make it so sent Barry
“Nugget” Rees in his place. Nugget is also a regular at Goodwood Oval
supporting the Saints. We hope to have Graham and some other well
known cricketers playing for the saints in next year’s 20/20 game.
Then most recently in May the Goody Saints who are this year celebrating 100 years in footy,
played a triple header game against Sacred Heart Old Collegians under lights at home. Patch
the Lion attended and rattled a tin for a couple of hours. All in all HeartKids has received
around $600 from these events. We are looking forward to being involved in future activities
of the club and getting our message out there. Thanks again to Michael Lawton and to the
Goodwood Saints Footy Club for making these events happen.
David Harrison
Gawler Jockey Club
Thank you to the Gawler Jockey Club for naming races on 20th April in memory of Elle Hillman,
and raising awareness of HeartKids SA. We appreciate your support.
FREE First Aid Training
Sessions for
Heart Kid families
focussing on CPR training
The next first aid training sessions, run by
St Johns, for family members (parents/
grandparents) with a child with heart
disease or those expecting a child with heart
disease are as per below.
These sessions are for those needing a
refresher on first aid or who have never had
CPR training before (they are not heart condition
specific training sessions).
The session will be non-assessed (no certificate
issued on completion), however will
include practical and theory training, with
the majority of the session focussing on CPR
training – which will hopefully give that little
bit of extra “peace of mind”.
Adelaide – Training Sessions
Where: St Johns House,
85 Edmund Avenue, Unley
Dates: 18 August 6:30pm – 9:00pm
19 October 6:30pm – 9:00pm
15 December 6:30pm – 9:00pm
Harry the HeartKid Bear around town!
Please RSVP to:-
Prisca Harrison
prisca.harrison@heartkidssa.org.au
ph: 8332-2901
text: 0402-126579
Enter to WIN
an awesome kids play
tent dontated by canon
Harry was recently seen at the Northern Playgroup in
Prospect, taking part in a photo shoot for the upcoming
City to Bay! As you can see - Harry is not only
loved by his playgroup friends - but by parents too!
We would love to hear what you & your Harry Bear
have been up to! Feel free to email your photo(s)
and short description to HKSA at
mail@heartkidssa.org.au or by post to
6 Watson Avenue, Rose Park SA 5067.
Send in your photo to be in the running to win an
awesome Kids Play Tent, kindly donated by Canon.
We hope the Northern Playgroup kids are enjoying playing
with their tent each Wednesday!
Whyalla – Training Sessions
Where: St Johns,
89 Nicholson Avenue, Whyalla
Dates: 13 August 1:00pm – 4:00pm
12 November 1:00pm – 4:00pm
Please RSVP to:-
Nicole Carter
nicole.carter@heartkidssa.org.au
mob: 0450-100433
14

Upcoming Events and Activities
Upcoming Events and Activities
Upcoming Events
Upcoming Events
The Channel 9 Telethon
2011 Melbourne Cup Luncheon
Graham Manou’s
Ride for Life
5 riders, unsupported, 3,000kms – Darwin to Adelaide
Our thanks and gratitude to Graham Manou and his riders for all of
their passion and planning in organising this year’s Ride for Life.
Unfortunately the ride needed to be postponed after Day 3 due to
safety issues and other unforeseen circumstances. We sincerely thank
Graham for his amazing efforts. He is an inspiration, and we encourage
you to read his journey on www.grahammanoufoundation.com.au
The Channel 9 Telethon 2011 Melbourne Cup Luncheon will
be held at the Stamford Grand on Tuesday 1st November.
If you would like to attend, please contact Sheree on 8332
2901 or sheree@heartkids.org.au
2012 HeartKids Teen Camp
Interested in attending the 2012 Teen Camp? Please contact
Emma Kerr on 0437 811 639 or 08 8297 9207
Free Tix!
HeartKids SA is lucky to occasionally be offered free tickets
to various events throughout the year. If you would like
to be included on our list of families interested in receiving
email notifications of upcoming events, please contact
Sheree on 8332 2901 or sheree@heartkids.org.au
“Welcome Home Party”
Saturday 9th July
4:00pm - 7:00pm
(you are welcome to “kick on”
after if you like at the Club)
West Beach Surf Club
Cnr Seaview & West Beach Rds
West Beach
RSVP by 4/7 to assist with catering to:
mail@heartkidssa.org.au or 8332-2901
Sausage Sizzle for dinner,
kindly prepared by our
Kiwani’s friends.
Please note:
The Welcome Home Party
planned for Saturday 9th July
has been
cancelled
Face Painter / Balloon artist /
Patch the Heart Lion /
craft and other entertainment
for the kids
Drinks can be purchased at the
Surf Club bar,
kids soft drinks will be
paid for by HeartKids SA
Thank you to all who worked so hard in planning this year’s Ride for
Life and Welcome Home Party. Your support is greatly appreciated!
FOLLOW THEIR JOURNEY OR MAKE A DONATION via
www.grahammanoufoundation.com.au
HeartKids is proud to announce its first ever seminar for
families affected by Childhood Heart Disease to be held at
the Australian Museum, Sydney on Saturday 27th August.
This one day seminar brings together leading medical
specialists and allied health practitioners to share the latest
and most relevant information for families affected by CHD.
In addition to the educational benefits, this also provides a
valuable opportunity for individuals, parents and families to
share and learn from each other’s experiences.
Topics will include:
♥ Genes and environment: an investigation into the
causes of CHD;
♥ Effects of early cardiac surgery on the neurodevelopmental,
emotional and physical
development of the child;
♥ Social and psychological impacts on families;
♥ The educational experience as a heart child;
♥ The transition process from paediatric care to an
adult care facility;
♥ Clinical management and lifelong issues associated
with adult congenital heart disease.
Registrations have opened and anyone interested in
attending can register via www.heartkids.org.au
15

Upcoming Events and Activities
Upcoming Events and Activities
Playgroup
HeartKids SA has
3 Playgroups operating
during school terms:
Marion: Tuesdays 10am-12pm
Marion Road, Mitchell Park
Prospect: Wednesdays 10am-12pm
91 Prospect Road, Prospect
For details, please contact Deb
0451 126 766
Whyalla: Wednesdays
12.45pm – 2.30pm
Loveday Street
For details, please contact Nicole
0450 100 433
Glow
DIsco
HeartKids SA are having a disco for
all heart kids & their siblings
open to all ages with two dance areas.
When... Friday 15 th July 2011
The 1st week of the school holidays
Where... Gaza Football Club,
North East Road, Klemzig
Time... 5.15pm (Disco 5.30pm till 7.00pm)
Kindergym
Whyalla Kindergym
is held on the first Sunday
of every month from
1:30-3:30pm.
For details, please phone Nicole
0450 100 433.
We look forward to
seeing you there!
“For a bit of fun come dressed in as
many colours as you can!”
The disco will be run by Footsteps Dance Company.
A bar will be open to buy drinks.
HeartKids SA will provide finger food for the kids.
R.S.V.P. by sms or email BY 7TH JULY 2011
Kylie-ann 0412 948 196
Terissa 0407 359 504
mail@heartkidssa.org.au
New Northern Playgroup
for Salisbury/Elizabeth
area.
There has been some interest in
forming a new playgroup in the
Elizabeth/Salisbury area.
If you are interested in attending
or coordinating this group,
please contact
Deb on 0451 126 766.
Harry with some of our wonderful Northern Playgroup children
16

Upcoming Events and Activities
Upcoming Events and Activities
Where:
When:
How much:
What’s on offer:
What to bring:
Charity Quiz Night
Hosted by Australian Institute of Conveyancers (SA Division)
Fullarton Park Recreation Centre
411 Fullarton Road, Fullarton
Saturday 27 th August
6.30 - 11.00pm
$10 per head
Make up a table of 10 friends or family
or come on your own and we will find a table
for you.
LOADS of prizes and Lots of Fun!
Dress your table up to win a prize!
Your friends/family
Snacks to keep the brain working
Lots of change $$$
Drinks must be purchased at the venue
(Bring a glass and we will fill it)
“Real generosity is doing something nice for
someone who will never find out.”
Frank A Clark
To book your table, please phone 8332 2901 or mail@heartkidssa.org.au for an order form
Diary Dates
Diary Dates
July 2011
9th July
15th July
SIDS and Kids Memorial Day in Whyalla
CANCELLED - Graham Manou’s
“Welcome Home Party”
School Holiday Glow Disco
August/Sept Cuppa for HeartKids
21st August Official Opening & Family Fun Day at
Freeling for Channel 9 Telethon
Distinctive Home and Land Lottery
27th August AIC Quiz Night
27th August Living With Heart Disease Seminar in
Sydney
8th Sept
18th Sept
HKSA hosting Home & Land Lottery
Stand at the Royal Adelaide Show –
please come & say hello!
City to Bay
3rd October School Holiday Golf – driving range/
mini golf.
October
Fantasia in Whyalla
3rd, 5th, 8th & 9th October
Home & Land Lottery HKSA Open
Inspection Days at Freeling
23rd October Katelyn’s Family Fun Day
1st Nov Channel 9 Telethon 2011
Melbourne Cup Luncheon
November
27th Nov
Regional Bus Trip to Adelaide for the
HKSA Christmas Picnic
HeartKids SA Christmas Picnic
The Take 9 Movie Card is only $19 through HeartKids SA!
• See 2 movies for free • Includes 9 movies for only $9 each • A bag of Menz Fruchocs
to share • Available all sessions • Valid to end of February 2012 • Chance to
win a Wallis Gold Pass • Over $150 savings on normal ticket prices • Card costs $19
To order, please email mail@heartkidssa.org.au or phone 08 8332 2901 Alternatively
Order Forms can be downloaded from www.heartkidssa.org.au.
Jan
5th May
2012
2012 HeartKids Teen Camp
Tiny Tickers Ball
See also pages 14 & 16 for First Aid, Playgroup &
Kindergym times.
17

Childhood Heart Disease White Paper
Childhood Heart Disease White Paper
The “White Paper” on CHD, Childhood Heart Disease in Australia – Current Practices and Future
Needs, was prepared by LaTrobe University academic Professor Sandra Leggat. Professor Leggat
consulted objectively and extensively with patients, families, care workers, clinicians and researchers.
She looked closely at what is needed to both make CHD manageable for patients, families,
care providers and the wider community, and what can be done to keep Australia’s CHD effort as
truly world-leading as it is.
Key Findings
• It is estimated that there are approximately
64,000 people currently living in Australia with
congenital heart disease.
• Approximately half of these (32,000) are under
the age of 18.
• The number of adults (those over 18) living with
CHD is increasing by 5% per year.
• Survival rates of children affected by CHD have
risen significantly over the past 20 years as a result
of enhanced medical interventions. (Instead
of a mortality of 85% during childhood following
the natural course, over 85% of these infants are
now expected to reach adulthood)
• CHD is still the greatest killer of infants in Australia
– (overtaken by accidents and cancers after
the age of 5)
• Death rates in Australia’s indigenous community,
as a result of CHD, are 2.6 times higher than for
other Australians.
• Australia indigenous communities have some
of the highest rates of rheumatic heart disease
in the world. This is as a result of streptococcal
infections and is totally preventable.
• Recent studies have indicated that children with
CHD may have higher neurodevelopmental,
psychosocial and behavioural needs as a result of
their conditions and procedures, which may affect
their schooling.
• Three recent State health system reviews have
highlighted the current pediatric health system
organisation may be contributing to suboptimal
patient outcomes.
• There is a need for a national patient registry to
track diagnosis, treatment, outcomes to provide accurate
information of health system planning.
• There is a need to define the role and relationships
of services and programs to enhance the coordinated
care network for children and adults with CHD.
• There are shortfalls in trained staff to meet the future
needs of the growing population of those living
with CHD.
• There is no cure for congenital heart disease. Even
survivors of successful childhood treatment can face
life-long risks from congenital heart disease, including
heart failure, rhythmic disorders, stroke, renal
dysfunction, and neurocognitive dysfunction.
• Less than 10 percent of adults living with complex
congenital heart disease currently receive recommended
cardiac care. Many individuals with congenital
heart disease are unaware that they require
life-long specialized health surveillance. Delays in
care can result in premature death and disability.
• The estimated life expectancy for those with
congenital heart disease is significantly lower than
for the general population. The life expectancy for
those born with moderately complex heart defects
is 55, while the estimated life expectancy for those
born with highly complex defects is between 35
and 40.
18

“White Paper” Recommendations
The following recommendations relate to the potential role
of HeartKids in addressing some of the issues raised in this
Discussion Paper, and are conditional on sufficient funding
being raised by HeartKids to support ongoing operations as
well as strengthening the strategic planning and focus as it
grows and defines itself as an organisation:
Channel 9
Telethon
Distinctive
Home and
Land Lottery
Tickets $ 10
Book of 4 for $ 30
ARE YOU
FREELING LUCKY?
1. It is recommended that HeartKids, in consultation with
the specialist clinicians and service providers, develops
an effective strategy to create greater understanding
and awareness of the needs of children with congenital
heart disease and their families.
2. It is recommended that HeartKids considers broadening
its funding base to enable the expansion of its family
support services into the community (including regional
areas and transition into the education system) and developing
an appropriate and effective national support
structure for families with CHD.
3. It is recommended that HeartKids works with the Aboriginal
and Torres Strait Island communities to advise
the Commonwealth Government on how best to provide
family and healthcare support to the heart kids and
their families in these communities.
4. It is recommended that HeartKids works with the specialist
clinicians and service providers to identify information
that is scientifically accurate and relevant to
parents-to-be and heart kids families about the prevention
of both congenital and acquired forms of childhood
heart disease, and to disseminate that information to
the community.
5. It is recommended that HeartKids works with hospitals,
specialist clinicians, the National Health and Medical
Research Council and the National Institute of Clinical
Studies to develop, test, publish and disseminate relevant
information on the causes, diagnosis, treatment
and management of congenital heart disease including
management of the disease and its complications
throughout life. Where possible information brochures
could be provided in languages other than English.
6. It is recommended that HeartKids considers partnering
with the cardiac care hubs and bereavement experts
to ensure that bereavement support is as available and
sensitive to family needs as reasonably possible
First prize a furnished
country style home or $250,000 cash.
Donated by Distinctive Homes,
Freeling Estate, Taste Furniture
and Supreme Kitchens. Home
valued at over $400,000.
Second prize $20,000 cash.
TE2245_2011_HomeLandLottery__DL Flyer.indd 1
Sponsored by MMadvertising & tav productions.
Licence No. M12245. Photos for illustration purposes only.
Tickets can be purchased through
HeartKids SA from 8th July 2011.
17/06/11 12:47 PM
If you would like a copy of all 20 recommendations, please
contact 08 8332 2901 or mail@heartkidssa.org.au
Buy a book for $30, receive a free ticket and
a chance to win $5,000 cash
19

Children, Youth and
Women’s Health Service
MORIALTA
TRUST
I N C O R P O R A T E D
Yes! I’d like to become a supporter of HeartKids SA
Complete this form & post to:
PO Box 364 North Adelaide 5006
HeartKids SA is a registered charity and our
services rely heavily on the wider community to
be volunteers, sponsors and donors.
Tax deductible donations can be made securely
on our website www.heartkidssa.org.au or
forwarded directly to HeartKids SA.
I would like to make a donation of $___________
(thank you, an official receipt will be sent)
o Cheque o Money Order - Payable to ‘HeartKids SA’
o Visa o Mastercard
Credit Card No.:
oooo oooo oooo oooo
Expiry Date: oo/oo
CVC No.: ooo
Please send me more information about
HeartKids SA and in particular:
o Becoming a Member
o Becoming a Volunteer
o Participating in fundraising & awareness
o Business Sponsorship
o Making a regular gift through my bank
o Leaving a gift in my Will
Please be assured your details remain confidential. If you do not wish to
receive any further information from HeartKids SA, please tick this box o
Cardholder Name: __________________________________
Signature: _________________________________________
Mr/Mrs/Ms _______________(first name)_________________ (surname)
Street Address: __________________________________
Suburb/Town: __________________________________
State: __________ Postcode: _________________________