Newsletter Volume 2 2016

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support | awareness | research | advocacy
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heartkidssa/nt
SA NT QUARTERLY MAGAZINE | 2016 VOL 2
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See inside for inspiring and heart-felt stories,
Community & Corporate Support, News, Events & Fundraising
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heartkidssa/NT
HEARTKIDS SA/NT IS PROUDLY SUPPORTED BY
OUR VISION
We aspire to life unaffected by
Childhood Heart Disease
OUR MISSION
To improve the lives and futures of
those affected by Childhood Heart
Disease, by providing high quality,
caring support, information and
advocacy and to give hope by driving
world class research.
MORIALTA
TRUST
I N C O R P O R AT E D
Women’s and Children’s
Health Network,
SA Health
OUR VALUES
Hope, Integrity, Caring, Determination,
Collaboration
HEARTKIDS SA/NT
275 Main North Rd,
Enfield SA 5085
PO Box 364
North Adelaide SA 5006
08 8269 3122
[email protected]
www.heartkidssa.org.au
www.facebook.com/HeartKidsSA/NT
NATIONAL SPONSORS
HEART TO HEART: THE MAGAZINE
OF HEARTKIDS SA / NT
2016 VOLUME 2
HEART TO HEART SUBMISSIONS:
[email protected]
Permission to reprint any of the personal stories
in this newsletter is required from the author or
the GM. Any other articles may be reprinted with
an acknowledgement to HeartKids SA/NT. Please
note that articles published in this newsletter
do not imply endorsement and may not reflect
overall views of HeartKids SA/NT. 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.
2
DESIGN & LAYOUT:
h3lp.com.au
Matthew Fazakerley
[email protected]
to
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SA/NT PATRON
Dr Gavin Wheaton
SA/NT AMBASSADORS
Mitch McGovern
Callum McNair
Dr Bill Papps
Dr Bo Remenyi
Erin Zilm
a message
from the chair
Can we believe it is over half way through 2016! In the absence of our State Manager, I
would like to take this opportunity to provide you with an update on our key activities
during this last quarter.
Following on from our front page, we welcome Mitch McGovern (Crow’s player number 41) as one of our new HeartKids
SA/NT Ambassadors. Mitch has already been incredibly supportive of the work of HeartKids, having a close friends
family supported by HeartKids in his home state of Western Australia. He is looking forward to becoming more involved,
particularly at the conclusion of the footy season. So thank you again Mitch for your support of HeartKids. We look
forward to seeing more of you soon.
It is with great pleasure to announce we have recruited our new State Manager, who will start 8th August 2016.
Maryanne Noon brings many years’ of experience working in Senior Management positions for a range of not-for-profit
organisations, such as Alzheimer’s Australia SA, Australian Red Cross, Juvenile Diabetes Research Foundation and St
John Ambulance. Maryanne is very much looking forward to meeting everyone and working together on the exciting
future for HeartKids SA/NT, so please join us in welcoming her to our organisation.
As usual, this magazine showcases some of our fabulous activities we have had during the last quarter, including Super
Boss Day and Magic Hearts Derby. I would like to thank our corporate sponsors for their ongoing support, and also
thank our amazing volunteers and organising committees for all of their hard work.
In place of participating in the City Bay this year, we are bringing Two Feet and a Heartbeat to Adelaide on the 30th
October 2016. This walk/run consists of either a 2.1 or 8 kilometre circuit, so we would love to see you there. See more
details on page 15.
The Special General Meeting held 28 June 2016 has resulted in our organisation approving the move to a one HeartKids
model. See more details on page 12.
Finally, we would like to thank Kristie Molloy, who has recently resigned as our Board Secretary. Kristie joined the
Board in 2014, and has been intrinsically involved in our organisation on a number of different levels, including the
organising committee for Magic Hearts Derby. We thank Kristie for her past (and future!) contributions to our wonderful
organisation. Kristie remains a loyal member, advocate & volunteer for HeartKids.
Kind Regards
Mischelle Hill | Chair – HeartKids SA/NT
contents
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2
3
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5
6
7
8
9
10
11
Cover - Mitch McGovern
Our new Ambassador Crows player Mitch
McGovern with HeartKids Ava and Francis
HeartKids Sponsors
A message from the Chair
Jacinta’s Story
Volunteers & Milestones
Regional Support
Regional News
David’s Story
NT News
Heart Angels
Remembering Heart Angel Ruby
12 HeartKids Australia Update
13 HeartKids Ambassador Update
14 Support Events
16 Upcoming Events
18 Community Engagement
19 Corporate Engagement
20 Magic Hearts Derby
21 Super Boss Day
22 HeartKids Care Bags
23 HeartKids SA/NT Staff Contacts
24 Calendar of Events
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heart kids story
Jacinta’s Story
After decades of unsuccessfully trying to have children, I had IVF to
conceive my daughter. My partner and I stupidly thought having a child
would not change life that very much!
I intended to work right up until the birth, take a small amount of time off to cuddle my bundle of
joy and then we thought we could share the parental duties. Unfortunately though I spent most
of my pregnancy unable to work on either bedrest at home or in hospital. But the problem was
my body, not the baby who was the perfect picture of health. We had so many scans and she was
always perfect. Eventually my body could not hold out any longer and Jacinta was born over five
weeks early.
The Head of Neonatology said the baby was fine but had to be in intensive care overnight
as a precaution. I was also in intensive care elsewhere for my own issues and needed blood
transfusions. It was 24 hours later (when we were both still in separate ICU wards) that I was told
that my baby actually had a very serious heart condition and would have to be flown to Melbourne
for risky surgery within days or she would die. We were on standby for a few days and then only
had about 12 hours notice to fly urgently. Baby Jacinta went on her own mobile ICU plane as she
continued to stop breathing.
We had barely any time to pack and were in too much shock to pack anything useful. HeartKids
provided a carebag which was filled with useful things like panadol, laundry powder, toothbrushes
and notepads for writing down all the things the surgeons tell you. Things you never think of when
you pack.
We christened our baby the day before her surgery at the Royal Children’s Hospital in Melbourne
by some random priest because we knew the odds. Jacinta thankfully survived her first long open
heart surgery. But it wasn’t without its complications. Newborn babies (especially premature ones
who are still developing) are not supposed to be on planes, having their ribcages broken open,
their hearts stopped for 5 hours, bypass machines, blood transfusions, morphine or catheters. To
be honest, I broke down when I first saw her after surgery.
Unfortunately, the surgery patch-up did not last as long as they hoped. Only a couple of months
really. Jacinta’s next surgery was much more complicated than the first but they did not want to
ABOVE: Jacinta in hospital and at home
after her second operation
do it before she turned 1 because of the success rate. So we stayed in Adelaide for the next 10
months and I watched her get worse, praying she would make it to one. She had a lot of medical
intervention during that time because the surgery trauma caused her red blood cells to kill each
other and required blood transfusions. She also had renal problems due to the catheter they had
to give her. At one point, Jacinta had her own paediatrician, cardiologist, haematologist, dietician,
urologist, audiologist, GP, speech therapist and an ENT surgeon! Certainly makes it impossible to
work, particularly when they cannot go to childcare and have severe separation anxiety.
Jacinta did make it to 1 and she survived her second open heart surgery. Again, we got barely any
notice to get on a plane – and even then we still did not know when the surgery might be. By this
time, Jacinta was old enough to know what was going on but, apart from the separation anxiety,
also had severe medical anxiety. So my mother came over so that we three could take it in turns
being at her bedside 24/7 so she was never without one of us as she was too frightened to be left
alone for even a moment. That included sleeping on a very uncomfortable couch in her room in
intensive care.
Jacinta is now two and has cow valves in her heart instead of her own. They won’t grow as she
does and will disintegrate and, in fact at the last echocardiogram, it was discovered they have
already started to disintegrate. That means repeating the surgery as often as required, although our
cardiologist thinks we might still have a few more years before the next open heart surgery.
Despite all this we still believe we are fortunate as a family and are so grateful to not just HeartKids
SA/NT but to the incredible community that surrounds us through HeartKids who have all
supported us along the way and continue to do so.
Kristie & Heather | Jacinta’s parents
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support
Volunteer Thank Yous
It has been another busy few months here at HeartKids. I would especially
like to thank our Volunteers who manned the Sausage Sizzle at Bunnings on
Monday the 27th of June.
A very big heartfelt thanks to Janet Sperou, Louisa Kemp, Roy Jones & Tony Jones, you all did a
fantastic job, helping us to raise over $500.
We also had our Magic Hearts Derby Fundraiser on Saturday the 2nd of July. It was a great night,
and we couldn’t have run the event without the help of our Volunteers. Thank you to Janet Crook &
Judy Weckert for helping us to set up during the day. And a massive thank you to Chris Gibki, Amy-Jo
Kuskopf, Kellie Taylor, Daniel Jones, Tony Jones, Janet Sperou, Joanne Sperou & Nikos Sperou who
all helped to make the night run as smoothly as possible. Special thanks to Celene Serocki for helping
out during the day and night. A very BIG heartfelt thanks to Vicki Kramer & Tim Harrison for taking such
amazing photos throughout the night. Our biggest thanks go to Craig Woods, Brad & Louise Pickford,
ABOVE: Volunteers Vicki Kramer &
Kristie Molloy
and Kristie Molloy who volunteered their time to organise this event over the last seven months.
May for the People’s Choice Credit Union Lottery, we say a very big thank you. Kylie Baker, Jaime
Meade, Lucy Gale, Barb Rotolo, Tahlia Rotolo, Tricia Margrie, Leah Hill and Louisa Kemp. You all did an
...
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han
To all the Volunteers who helped us to hold a stall at Colonnades Shopping Centre for a week in
t
amazing job, we sold a large number of tickets that week!
HeartKid Milestones
Jordyn represents Australia in Junior Hockey in Hawaii!
Jordyn had open heart surgery to repair her aortic valve in January 2013 and started playing inline
hockey in August of 2013. Whilst playing for SA in 2015 at the hockey nationals, she was selected to
represent Australia in the world junior womens tournament held in Hawaii in July.
Jaxon turns two!
HeartKid Jaxon celebrated like a king when he recently turned
two! His parents continue to be amazed with every milestone he
reaches as it only seems like yesterday that he was undergoing
open heart surgery.
Isla just keeps swimming!
Prior to Isla’s surgery in February this year she had minimal physical output and her body just couldn’t
do it. Now nothing stands in her away, she doesn’t stop. She is now able to participate in swimming
which she started 3 months post op, she absolutely loves it.
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regional support
ABOVE: Nicole and family welcoming baby
Grace
“Life is not about waiting for
the storm to pass - it is about learning
how to dance in the rain.”
Welcome Back Nicole!
It is with great pleasure to announce my return to HeartKids SA/NT after
returning from maternity leave. In January we welcomed little Grace to our
family. I look forward to working with the new HeartKids team, meeting new
families and catching up and supporting current members.
I look forward to expanding the arm of support to regional and remote areas and attending cardiology
clinics and meeting families. I have enjoyed travelling to meet families and support the regional
representatives since my return. I have great passion to be an advocate for families as I understand the
many barriers families can face living regionally.
I have great passion to support regional Heart Families and Heart Angels families; I have been studying
at Flinders University externally since 2010 to expand my knowledge in support. I look forward to
working alongside the Family Support Coordinators Melissa (SA), Susan (NT) and Tracy (VIC) to support
the HeartKids SA/NT families.
I am thinking of all the families who have been in hospital and those travelling for appointments. My
thoughts were with all our families over the Mother’s Day period, the families who were in hospital,
especially our families who had a loss and those whose child’s anniversary falls around this time. We
often talk about the strength we see in our children but Mother’s Day is a time to reflect on the strength
of our mothers.
I look forward to sharing the new regional calendar with you. Please feel welcome to phone if you are
travelling for an appointment or surgery or where ever you are in your journey, it would be lovely to
hear from you.
Nicole Carter | Regional Support Coordinator
Aussie Muscle Car Run
Sincere thanks to Jordan, Megan & Amaya Zerk and friends who expertly
manned the BBQ at a Show ‘n’ Shine Car Show held on the Village Green at
Lyndoch on 17th April.
A sunny Sunday in the Barossa resulted in a great crowd of car lovers enjoying their egg & bacon and
steak sandwiches and gourmet sausages which sizzled all day.
Funds raised from this event have been used to purchase a fantastic BBQ to be utilised for events at the
HeartKids office as well as a beautiful outdoor setting to have pride of place in the much anticipated
Memorial Garden.
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Liams’ Story
When I was only eight months old I travelled on an aeroplane with my mum and dad to have my
Recently our Family Support
Coordinator Melissa McCormack
travelled to Mount Gambier
hoping to catch up with some
families during the clinic at
Mount Gambier Hospital.
first open heart surgery at the Royal Children’s Hospital Melbourne.
She was fortunate to spend some time with
I have seen the photos of me in the hospital after my surgery and when I look at them now it is a
a few families, one of those being Liam and
reminder that this is about to happen again.
his family. Liam is nine years old and is about
We know that it is nearly time for more surgery as I have been feeling a bit tired and unwell lately.
to make the trip back to Melbourne for more
“On the 17th December 2006 I was born with a Heart Condition called Tetralogy of the Fallot.
open heart surgery. His first open heart
I am looking forward to feeling better again so that I can get back to doing the things I enjoy.
surgery was when he was only eight months
To help my friends understand what is happening and why I am so tired I decided to explain it to
old.
them. With the help of mum and dad I made a power point with photos sharing my story and what
Liam’s family explained how his friends at
will happen next. I even put a slide in to remind my friends to be gentle when I get back because I
school didn’t quite understand what was
will still be getting better.
happening and why Liam was unable to
It felt really good explaining it to the class. I think they understand it now. My teacher has suggested
do the things he used to do with them as a
that we take some photographs of this upcoming trip to the Royal Children’s so that I can do
another presentation to the class when I return.
”
Liam | HeartKid
result of him becoming increasingly tired and
feeling unwell.
With this in mind Liam’s family and teacher
gave him the opportunity to make a power
point using photos of his time in Melbourne.
His mum Wendy said that it has definitely
helped the other kids understand and be
more aware of why Liam is feeling the way
he is. It was also a great opportunity for Liam
to create awareness amongst his school
.
Do you have any tips or tricks that
have worked for your family?
community about his heart condition.
Please share them with us as we are always
looking for ways to better support our HeartKids
and their families.
You can email our support team at
[email protected]
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nt heartkids story
David’s
Story
My partner Daniel and I were expecting our 4th child in 2015. Everything was
progressing well, like my other pregnancies until I had a scan at 29 weeks...
I was told that I would need to make an appointment at the Royal Darwin
Hospital to have some more detailed scans done.
They advised us that it looked like our baby’s arteries to the heart were not in the right position. The
extra scans confirmed that our baby boy had a heart defect, and therefore he would need to be born
in Melbourne so he could have lifesaving open heart surgery after birth. It was so sad to hear all of this,
knowing that we wouldn’t be able to take our baby home after he was born like we had with our other
three children.
Five weeks before our baby was due we were flown to Melbourne to wait for him to be born. We stayed
in a two Bedroom Apartment not far from the Royal Women’s Hospital. I continued to have more scans
in the lead up to his birth.
On the 28th of July 2015, we welcomed our beautiful little boy David. He looked healthy and normal,
just like our other children did when they were born. He weighed a healthy 3.995kgs. After he was given
numerous medications he was transferred to the Royal Children’s Hospital via Ambulance. The next day
we all went over to see our little boy. He had his own room and the Doctors were taking very good care
of him. When he was 2 days old, he had an operation called a Balloon Atrial Septostomy and he was
in ICU for 2 days. He was then moved on to the Koala Ward where I was able to sleep in his room with
him. On the 5th of August we were able to take him out of the Hospital. We were now staying at Ronald
McDonald House. David was able to stay with us until he had to have his big open heart surgery.
On the 19th of August, David was admitted to have the operation to repair his Transposition of the
Great Arteries. This was the saddest day of our lives. All day we waited for a call from the Surgeon.
Around 4pm that afternoon the Surgeon called us to let us know that everything went well, and that
David was ok so we went straight back to the Hospital to see him.
He was in ICU for 2 days, and was then moved back to the Koala Ward. That night it looked like he was
ABOVE: In hospital and at home,
months after his operation
having trouble breathing so the Doctors kept a close eye on him. Early the next morning something
went wrong. The Doctors and Nurses rushed into his room and started working on him. His oxygen
levels were low and they weren’t sure why. David was rushed back into ICU where they did numerous
tests to try and find out what was wrong with him. They discovered that his right lung had collapsed
which had caused his oxygen levels to drop. Once he was stable we were able to see him.
David stayed in the ICU for another 2 days before he was moved back to the Koala Ward where I stayed
with him. On the 28th August he was discharged from Hospital and we were able to take him back to
Ronald McDonald House. We were so happy that our little boy was well and that we would be flying
home back to Darwin, where David would meet the rest of our family.
While we were in Melbourne we took our older children, Kyle 12, Christopher 5 & Nina 2, to the
Melbourne Zoo, Football matches & Rugby Games.
Everyone in the Hospital took very good care of David and they were so nice to us all. We would like
to thank everyone who took care of our special little boy at the Royal Children’s Hospital, they did an
awesome job. Also we would like to say a huge thank you to Ronald McDonald House in Melbourne and
HeartKids SA/NT for everything you have done for our family.
Barbara & Daniel | David’s parents
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nt support
NT Activities
People’s Choice Bass in the Grass
People’s Choice Credit Union proudly offered a select few HeartKids
from the Northern Territory to attend a special day on the 20th May
2016 with a meet and greet with the bands playing at Darwin’s Bass in
the Grass.
The event was held at Darwin’s famous Crocosaurus Cove in the heart of the city. The older
children spent the afternoon with band members and performers. The kids talked and walked
and had a great time and enjoyed the event. The staff at Crocosaurus Cove made the day
ABOVE: Bliss N Esso with our NT HeartKids
extremely interesting with snake and lizard holding while watching some of the band members
in a cage with the crocodiles surrounding them. One of the bands in particular Bliss N Esso and
comedian Barry Morgan paid particular attention with the HeartKids and even gave a special
performance by singing happy birthday to one HeartKid. Grant Dolphin of People’s Choice
organised the day and was instrumental in the day going so well. Bliss N Esso presented tickets
to Bass in the Grass 2016 to some of the HeartKids (older ones) and their families. It was a
fantastic uplifting day to see the kids and families with huge smiles on their faces. HeartKids in
the Northern Territory and the families that attended would like to thank Crocosaurus Cove,
Bliss N Esso, Barry Morgan and everyone who attended the day. With special thanks going to
Grant Dolphin from People’s Choice Credit Union for making the day possible.
Darwin’s Ford Enthusiasts Club
On the 26th May 2016 a fundraiser was held at Mindil Beach Markets
with proceeds raised being donated locally to HeartKids in the
Northern Territory and Care Flight.
The Darwin Ford Enthusiasts Club gathered the clubs members and their 1900’s Fords for a
huge display of motoring history. The evening was full of history and with some interesting
stories behind the cars from that period. Thank you to all who attended and supported this
fantastic event.
ABOVE: In front of the old Ford Cabs
Ward/Keller Breakfast Fundraiser
On the 26th of May 2016 the 14th Annual Budget Breakfast was held at
Skycity Casino. The event was conducted by the Law firm Ward/Keller.
The breakfast was attended by approximately 200 people from local NT businesses. HeartKids
in the Northern Territory was the sponsored local charity for this year. 10 year old HeartKid
Aaron Loganathan presented a speech to the breakfast, giving an informative view of his recent
journey. Aaron’s father Leon was influential in the morning being a success. HeartKids would
like to thank Leon Loganathan, Aaron Loganathan, Salty Plum Events, Skycity Casino and all
who attended. Special thanks go out to our local HeartMum Deanne Jewell and Katherine
Halkon from Rheumatic Heart Disease Australia for volunteering on the day.
RIGHT: Leon and Aaron Loganathan presenting a cheque to Sue Shanley
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9
Heart Angels
Memory
Boxes
HeartKids SA/NT are grateful to have a special relationship with ‘The Tom
Goodfellow Memorial Assistance Fund’ who are now generously donating
memory boxes to families that have lost a child.
Tom was 11 years old when he passed away in 2010 while waiting for a heart transplant. His loving
extended family began the fund to honour Tom’s memory and fulfil his wish to help other people.
The beautiful wooden boxes are hand-crafted by The Gilbert Valley Men’s Shed. The boxes contain a
selection of thoughtful gifts, including coping with grief books, forget-me-not seedlings, a special Patch
the Heart Lion toy with angel wings, magnets and a tin filled with M&M’s – Tom’s favourite chocolate.
ABOVE LEFT:
Kerry Goodfellow, with her daughters
Molly and Penny with one of the Memory
Boxes and a photo of Tom
RIGHT:
The contents of one of the Memory Boxes
Precious
Ruby Candles
Remembering Our
Heart Angels
We send our thoughts to those who
are grieving the loss of a precious
heart child, especially at this time the
families of:
Dorian Rabone
14.4.2016 – 19.4.2016
Logan Fergusson
29.4.2016 – 15.6.2016
Alexander Gilmore-Rankine
20.3.2015 – 15.6.2016
10 heart heart
to
As a way to help with their grieving process
Ruby’s Mum and Grandmother began
making candles. They found their new
hobby to be an enjoyable experience and a
way to keep Ruby’s memory alive.
The larger candles have a beautiful gift inside as a reminder
of the gift that Ruby was to them.
Check out their Precious Ruby Candles Facebook page or
visit http://preciousrubycandles.bigcartel.com/ to see
the fantastic range of containers and delicious fragrances.
$1 from every sale will be donated to HeartKids SA/NT.
Precious Ruby Candles also donate a pink or blue Angel
Candle to every newly bereaved Heart Angel family.
This is the most perfect example of a product being
“Made with Love”.
ABOVE LEFT: Precious Ruby Candles
founders Jane Faturic & Amanda Hocking
ABOVE: Pink and blue Angel Candles
Remembering
Heart Angel
RubyHarley Raine
Mikowski
14.2.2016 – 16.2.2016
We were so excited on the day that we found out we were expecting our
second baby. However, my Mummy instincts kicked in and I just knew
something wasn’t right. I remember being on the phone to my sister telling
her that something was wrong. She told me not to worry and everything will
be fine.
I was booked in for my 12-week ultrasound, so excited to see our little baby. The sonographer didn’t
Heart Angel
Anniversaries
June – September
Darcy Elston
seem worried at first but then left the room. After about 15 minutes she returned telling me I needed to
2.6.2003 – 5.6.2003
head straight to the hospital. I started panicking and of course asking questions. She told me that the
Simone Haebich
baby had 11mm of fluid around its neck. The hospital had copies of my scans and immediately gave
5.6.2012 – 7.6.2013
the termination talk, telling me that the baby possibly had Turners Syndrome. My partner Phill didn’t
Ethan Askwith
even know what was going on because he was at work at the time. I couldn’t make a choice right then
11.4.2012 – 9.6.2012
and there.
Daniel Kruse
We decided we wanted more tests to see what was really wrong with our baby. A CVS was booked at
5.6.2008 – 15.6.2008
the WCH to check for any chromosome abnormalities. I was terrified but it all went smoothly. After 2
Carla Zito
weeks we got our results which were all clear and we were so happy to be expecting another beautiful
9.5.2012 – 18.6.2012
girl, a little sister for Ivy. Another scan was done to try to find what was causing all the fluid. After what
felt like a life time, we were told she had a problem with her heart but it couldn’t be seen clearly. At this
stage I just felt sick, how could this be happening? Why?
Zachary Lines
23.6.2013 – 29.6.2013
Oliver Zanchetta
We went back in a few weeks to have another echo on our baby’s heart. The doctor pulled us into a
little room where we just knew we were about to be given bad news. They told us they couldn’t see all
4 chambers and gave us all the possibilities of survival, surgeries, etc. I cried my eyes out. We talked
about it all with our family and decided to keep her. We wanted to meet our princess, our little hero!
After more ultrasounds we finally were told she had Hypoplastic Left Heart Syndrome. My fluids began
to build up in my stomach to the point it was unbearable. I had Polyhydramnios so more tests were
done. I was about 30 weeks pregnant at this point and we were told that she also had Oesophageal
Atresia and Tracheo Oesophageal Fistula. It just seemed like the news got worse and worse every time
we went to the hospital.
20.5.2014 – 6.7.2014
Katelyn Crowhurst
2.2.1999 – 10.7.2009
Max Round
28.6.2002 – 11.7.2002
Serena Penney
3.2.2011 – 16.7.2011
Loni Player
18.3.2014 – 15.8.2014
Doctors couldn’t tell us how bad things were until she was born. At 35 weeks my waters broke while
lying in bed. We went to the hospital, so terrified it was all happening. I was booked in to have a
C-section but wanted to try naturally. My contractions were getting stronger and they tried to stop the
labour but she didn’t want to stay in any longer. She came out looking straight at me and time froze.
She was the most beautiful little baby I had ever seen. It was Valentine’s Day 2016.
They took Ruby straight away to help her breathe. I was so scared as to what would happen now. I was
able to go see Ruby in the NICU where scans were being done. Surgery was the only way to tell how bad
her oesophagus was. After about 6 hours Ruby was finally out of surgery and we received the bad news
that her oesophagus wasn’t attached. They couldn’t re-attach it as there was too much of a gap. Letting
Samuel White
19.8.1999
Giancarlo Fiorentino
21.8.2006 – 31.8.2006
Hayden Woodall
5.9.2009
Grace-Isabella Case
14.9.2011
it grow wasn’t an option with her heart needing to be repaired at the same time. Ruby wasn’t stabilising
Sienna Arnfield
after surgery and there was no hope. We then had to say goodbye to our little hero at only 2 days old. It
15.7.2011 – 16.9.2011
was the hardest thing we’ve ever had to do.
Alex Haebich
We know that Ruby is looking over us every day and we are so grateful we got to meet her, even if it
24.9.2015
was for a short while. We will cherish those beautiful memories we have for a life time and forever
Riley Quast
remember what a precious gift she was!
25.9.2007
Amanda Hocking | Ruby’s Mother
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heartkids australia update
One HeartKids Update
It is with pleasure that we can now advise that the members of every
State HeartKids Organisation and HeartKids Australia have approved the
integration of their activities to the one HeartKids model.
The support for a one HeartKids model was overwhelming and in many States met with over 99%
approval of voting members.
This support can be attributed to a number of elements, including amongst other things, the members
of each of the State HeartKids Organisations and HeartKids Australia having the confidence in their
boards; the boards facilitating a transparent and open approach to providing information; and
ensuring that the members voices were heard and will continue to be heard.
This is an important milestone in the growth of an organisation dedicated to improving the lives of
children with CHD.
From here the integration into one HeartKids will be undertaken in a coordinated manner. This will
involve the following steps:
1.
Appoint a National CEO
2.
Appoint an Independent Chair
3.
Finalise Constitution and register HeartKids Limited
4.
Finalise the Deed of Agreement
5.
State based representative Directors put forward to the HeartKids Limited Board
(see below)
6.
Initial HeartKids Limited Board formed.
Regarding item 5, we are now seeking expressions of interest for State Representative Directors for the
HeartKids Limited Board. We are seeking a range of skills and experience, however, previous board
experience is preferred. If you would be interested in this role, please reply to [email protected]
with your latest CV by 14 August 2016.
Meanwhile, it’s “business as usual” for us at HeartKids, we will continue to deliver all of our existing
support services to our members, continue to engage the community and raise funds for more
research.
The teams are also busy planning the delivery of the additional Support Services we will be delivering
under one HeartKids, and we will keep you informed of this as we integrate and plans are finalised.
If anyone has any questions, as always please do not hesitate to contact us at [email protected].
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heartkids ambassador update
Catching up with
Mitch McGovern
HeartKids Ava and Francis had a ball meeting new HeartKids Ambassador
Crows player Mitch McGovern for our front cover photo shoot. Mitch
is absolutely thrilled to be involved with HeartKids due to a personal
connection through a close friend back in WA.
Recruited in the 2014 AFL draft, Mitch is still new to Adelaide however is quickly firming himself as a fan
favourite within the Crows. After facing injury problems in 2015 and playing 11 games within the SANFL,
Mitch has started 2016 with a bang! His debut was in Round 1 against North Melbourne, and he has
since played every game this season. With 21 goals after 17 rounds Mitch is currently fifth on the Crows
goal kicking leaderboard. HeartKids is thrilled to have Mitch involved, who already has shown a keen
interest in not just being an ambassador but also finding out more about the journey our families go
through and how HeartKids provides support to them.
Following the photo shoot ten year old Ava put her journalist skills to the test as she interviewed
Mitch asking him questions we are sure all Crows fans have been desperate to know! Thanks Mitch for
answering Ava’s questions and being such a great sport. We look forward to seeing Mitch soon – once
the Crows have bought the flag home that is...
What is your favourite meal that your mum cooks for you?
Lasagne.
Who is your favourite Superhero?
Batman.
Which zodiac sign are you?
Libran (born October 11).
What is your favourite sport outside of AFL?
Basketball.
How much can you bench press?
103kg.
What is your favourite thing about living in Adelaide?
Definitely the speed of Adelaide and the lifestyle. It is very slow and down to earth and very much like
living in a big country town.
Are you a left or right brain thinker?
I’d like to think I’m left although I am right footed. I’ll say both!
Which actor would you chose to play you in a movie?
This is the question I was most unsure about. Tom Cruise maybe?
Favourite Colour?
Blue.
Most admired person?
Would definitely be my dad.
What are you most looking forward to in your role as a HeartKids Ambassador?
So I can give back to the families who are affected by Childhood Heart Disease given that close family
friends of mine went through a lot and were supported by HeartKids.
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support events
Latitude School Holiday Event
On Wednesday the 27th of April we held our School Holiday event at Latitude
in Greenacres. For two hours, a great time was had by the 74 Adults &
Children who attended.
ABOVE: Lily, Caitlyn & Angus having
a ball at Latitude
The under 5’s had a ball in the foam pit, on the trampolines & on the little playground. While the big
kids (including a few brave adults) took on the main arena full of trampolines, a skywalk, wall climbing,
dodge ball & foam pit, for the less brave (or sensible ones), the café was a great spot to watch all the
action from, have a coffee and catch up with other families.
It was also lovely for our staff attending the event, to have the opportunity to meet up with the families.
The joy on the kids faces was very evident at the end of the 2 hours. Most would have slept very well
that night!
A very big thank you to Vicki Kramer (HeartKid Mum to Zach) for taking some amazing photos of our
families having such a great time. Look forward to seeing you all at out next school holiday event!
Mother’s Day Breakfast
Wow! What a wonderful turnout.
We had fifty special Mums, heart adults and their support network attend our annual Mother’s Day
Breakfast on Sunday 15th May. The venue was the gorgeous Ramsgate Hotel at Henley Beach, with a
delicious and extensive breakie menu, good company and lots of laughter!
We were lucky enough to have some wonderful raffle prizes and an awesome goody bag, with lots of
fabulous items for each special mum and of course, the wonderful Body Shop Ladies were there to
ABOVE: HeartKids Mothers Day
breakfast guests
BELOW: Pampering from the Body Shop
pamper our Mums.
Another finishing touch this year was the “Life’s Little Helper” bags given to each mother or heart adult
on a heart journey. This was a real winner with all of the mums! It was wonderful to see so many of our
“heart” community relaxing, enjoying themselves and supporting one another.
A very special “THANK YOU” to the following people/organisations for their generosity and support in
making this a special day:
<< Body Shop- Elizabeth
<< Lyn Wilmshurst – PartyLite
<< Maggie Beer’s Farm Shop
<< Maria – Nutri-Metics
<< Patch the Heart Lion Foundation
<< Ramsgate Hotel
<< Robern Menz << SAS by Rovina
<< Simone Perele
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ABOVE: Life’s Little Helper bags
Fun Finding Dory!
A big thank you to Piccadilly Cinemas in North Adelaide for supporting our
July School Holiday Event.
Sunday 10th July was a wet and cold morning outside but we were lucky enough to be in the warmth of
the cinema watching Dory on the big screen.
Guests enjoyed not only the movie but were treated to popcorn and raffle tickets for our door prize.
For many of the children it was their first visit to the cinema and by the excited looks on their faces it
clearly won’t be the last! We hope to see you all again at our next school holiday event – details will be
available soon.
upcoming events
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upcoming events
Kelsey’s Family Fun Day
In Memory of Kelsey
Date: 5th November 2016
Where: Wigley Reserve, Glenelg North
Time: 11am - 4pm
List of our Stall Holders
•
Slow Life
•
Online Market Basket
•
B is for Bake
•
Rockin Roast
•
Little Oak Studio
•
Cutie Petutie Crafts
•
Spicey Kitchen Delights
•
Amalis Soy Candles
•
Barista In The Sun
•
The Little Joys of Adelaide
+ more to come
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Hearts of Hope
The director of Hearts of Hope found out that
she was expecting her first baby in October
2014. At her 12 week scan she found out her
baby had a 7.3mm Nuchal Translucency and
possible brain issue and heart issues. At the
end of January of 2015, she found out that her
baby girl had a serious congenital heart defect
called Hypoplastic Left Heart Syndrome
and would have had a hard life ahead of her
and that is not what Tamine wanted for her
daughter. At 19 weeks + 5 days, she had her
daughter, Kelsey Jade Swan was born at 20
weeks gestation. Since having her daughter,
Tamine has made it her mission to help
families in the same position.
Contact Us
Hearts of Hope
0422 079 818
[email protected]
www.facebook.com/heartsofhope
heartsofhopee.wix.com./heartsofhopee
Proudly supporting
Tour de Francis 2016
Dec 2
The Fair du Tour
Food, music, wine and
fun on the lawns at the
beautiful Lindsay Estate
in the Barossa Valley.
Help us beat last year's
record of nearly $20,000
raised for HeartKids!
Dec 3
Jan 20
Raise funds and join
the TdF team for a
Barossa cycling tour.
30, 60 or 90km.
Raise over $500 for
HeartKids and join team
TdF for the epic 157km
Bupa Challenge 2017.
Ride with us!
The Bupa Challenge
Find out more, register to ride, or become a supporter:
www.tourdefrancis.org
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awareness
community and corporate engagement
Amelia’s bakesale raises funds and awareness
Thank you to Woodcroft High student Amelia Gibbon who held a bakesale at
her school to raise money for HeartKids SA/NT.
Amelias efforts raised $257! Amelia was inspired by gorgeous HeartKid Kane to fundraise and spread
awareness about CHD. Well done Amelia!
Sheena runs the Barossa Marathon for HeartKids SA/NT
Recently mother of two Sheena Jackson from Minter Ellison completed the
Barossa Marathon raising funds and awareness for HeartKids SA/NT.
Sheena won the female competitors section completing the marathon in 3 hours and 5 minutes!
In doing so she also raised over $3,000 for HeartKids SA/NT. “I was inspired to run for HeartKids
after seeing the way they were able to support my brother and sister-in-law as their first-born child
underwent two major heart surgeries” Thank you Sheena. Wishing you all the best for your next
marathon challenge of attempting to finish under three hours!
An Ironman Effort from Darren
On Sunday 26th June while many of us were asleep in our warm beds,
Darren Barrett alongside close friend Corrie, was over in Ireland competing
in an Ironman Triathlon to raise money for HeartKids. Sound pretty easy?
Maybe. Maybe not…..
An Ironman Triathlon consists of a 3.8km swim, a 180km bike ride and a marathon run (42km), raced in
that order and without a break. It is widely considered one of the most difficult one-day sporting events
in the world. Most Ironman events have a strict time limit of 17 hours for participants to finish with the
race starting at 7am and the cut off being at midnight. Incredibly Darren finished in 12 hours and 24
mins AND rasied over $2,500 for HeartKids.
Darren was inspired by his close friends, brothers Corrie and Dale, who are both HeartKid dads to Ethan
and Rose. He saw first hand how completely overwhelming and at times devastating their journey
had been and wanted to do something to somehow help others similar to his friends. Darren said he
felt every minute of the 12 hours and that the conditions were terrible, however he had so much to
compete for. What a brilliant achievement. Thank you so much Darren.
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Rotary Adelaide has kindly donated $10k to HeartKids
HeartKids is an organisation especially close to David Egan, the past chair as
his son had the Fontan procedure over 20 years ago.
Part of these funds will go towards sending our family support coordinator and another heart mum
to the Fontan conference which is being held in NZ this September. The two participants, will then
come back to Adelaide and share their insights with all Fontan families in a free information evening
co-hosted by Dr Gavin Wheaton. Delegates for additional Fontan Conferences will also be funded by
this Grant.
We thank David and Adelaide Rotary for the opportunity and their continued support.
Aussie Gawler’s Team Contribution
HeartKids are thrilled to have the support of Aussie Home Loans Gawler
who recently donated $2,100 via an initiative led by the franchisee of Aussie
Gawler, Chris Bonnici, who is an active volunteer with Heartkids.
The staff at Aussie Gawler have been very supportive in helping Chris to raise money by donating $50
for every loan settled by each member of the team. They have also been organising regular movie
nights and other fundraising events since last October.
In support of Chris and HeartKids, Aussie Home Loan’s SA team also donated $4,000. The cheque was
presented to HeartKids this week at the Aussie Gawler store by Chris Bonnici and Graeme Hahn on
behalf of the entire Aussie team.
Bunnings Prospect Sausage Sizzles
HeartKids secured 4 Bunnings Sausage Sizzles at the Prospect Bunnings
store on Churchill Road, at Islington, with the first one on Monday the 27th of
June raising over $500!
This was mainly due to the fantastic sausages sourced by Louisa Kemp, a HeartKid Grandmother from
Crestline Butchers in Gawler. People were coming back for a second and third sausage, they were that
good!
Look out for us at Bunnings again on Saturday the 6th of August. Thank you to our Volunteers who
helped on the day and to Louisa, her family and Chris Dix from Crestline Butchers for supplying us with
such yummy sausages.
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19
Magic Hearts Derby
Whilst the political race was happening across the nation, around 200 guests
enjoyed a different kind of racing at the Magic Hearts Derby on Saturday
July 2nd. Held at Morphettville Racecourse and hosted by race caller
Terry McAuliffe, the event was a fantastic night that showcased the fun in
fundraising.
Many female guests embraced the theme wearing beautiful hats and fascinators, with HeartKids
grandmother Virginia Matthews winning the three hour spa treatment from The Lavender Room for
the best creation on the night. Guests enjoyed “mock” races where they could bid to own a horse and if
luck fell their way, they collected 50% of the winning bids if they had bid on the winning horse. Special
thanks goes to all four race winners who donated half of their winnings back to HeartKids! Many
also took advantage of the $20 wine wall which sold out by main course and the Magic Hearts Derby
sweep raffle, which was won by HeartKid mother Sami Glastonbury, who then generously donated the
winning prize of a fully stocked bar fridge back to HeartKids to auction off in the live auction.
HeartKids mother and board member Kristie Molloy provided an incredible insight into the struggles
that our families go through which many within the room were previously unaware of.
A huge thankyou must go to our key sponsors on the night Roadside Services, No Anchovies Studios,
Legoe Chambers, The Hessel Group, The Business Principal, Paior Law, Action Linemarking,
Delnorth International and Traffic Group Australia. Also a special thanks to all the businesses who
donated items for our fundraising in particular Port Adelaide Football Club, Jet Couriers, Australian
Holiday Centre, Villa Verde in Bali and The South Australian Jockey Club.
This event would not have been a success without the incredible work of the Magic
Hearts Derby Committee and the many volunteers who worked both on the night
and in the lead up to the event. Particular thanks to Craig Woods, Louise and Brad
Pickford, Kristie Molloy and Judy Weckert. These events are never possible without
the dedication from individuals like these so we truly appreciate their support.
20 heart heart
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TM
Faster than
the speed of light!
On Friday May 27, many workplaces saw the rise of the super hero as their
bosses donned the cape and tights to channel their inner hero for Super
Boss Day. Bosses were encouraged to dress as their favourite super hero for
the day, whilst raising money for HeartKids through their own Super Boss
donation pages.
In Victoria Square Superman and Batman from SA Window Cleaning protected the citizens of Adelaide
by cleaning windows whilst abseiling as only a true superhero can. Within businesses like People’s
Choice Credit Union there were an overwhelming number of superheroes. From Batman to Thor to
Captain America, even James Bond made an appearance (although we are still not quite sure what his
super power is….)
The media coverage around Super Boss Day was incredible as was the engagement on social media
firming this initiative to definitely become an annual campaign for HeartKids.
An enormous thank you to our bosses including those from People’s Choice Credit Union, SA
Window Cleaning, Homestart Finance, Jones Property Services, Rivergum Homes Group, Minter
Ellison and Beachside Dental Services. Thank you also to those who supported the day in particular
Reilly Snelgrove, Gillian McNeil, Channel 9 and The Press Gallery.
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21
support
HeartKids Carebags
Every family who travels to Melbourne for surgery is given a “HeartKids
Carebag”. This bag is a gift to the families to let them know we are here to
support them.
The bag includes various practical items which will assist them whilst being away from home and
the odd comfort item such as a Patch Teddy and quilt for their Heart Kid. HeartKids is thrilled to have
the support of Meister Mertiris Lawyers, who were successful in the live auction sponsorship of the
If you would like to support
HeartKids please either contact
the office on
08 8269 3122 or email
[email protected] or
complete the donation form on
the back of the magazine.
Thank you from the bottom of
our hearts!
Carebags at the recent Magic Hearts Derby and are now sponsoring these bags for the remainder of
2016. If you or your company have items you wish to donate to the Carebags please contact our office
on 08 8269 3122.
Every Dollar Counts
Did you know that
<<
<<
<<
<<
<<
22 heart heart
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$20 provides a meal voucher to a family for the day whilst their child is an inpatient at the
hospital
$80 can pay for a families carebag
$100 funds one counselling session
$300 can support a family travelling interstate for surgery
$1,000 provides a family with bereavement support if their child passes away
contacts
HEARTKIDS SA/NT
08 8269 3122
[email protected]
heartkidssa.org.au
facebook.com/HeartKidsSA/NT
OFFICE
275 Main North Rd,
Enfield SA 5085
POSTAL
PO Box 364,
North Adelaide SA 5006
FAMILY SUPPORT COORDINATOR
Melissa McCormack 0450 100 433
[email protected]
REGIONAL SUPPORT COORDINATOR
Nicole Carter
0428 059 815
[email protected]
FAMILY SUPPORT & EVENTS COORDINATOR
NORTHERN TERRITORY
HEARTKIDS SA/NT BOARD
Susan Shanley
0424 505 833
[email protected]
Chair
Mischelle Hill
BEREAVEMENT SUPPORT
COORDINATOR
Kathy Crowhurst 0451 126 766
[email protected]
Treasurer
Janet Sperou
VOLUNTEER COORDINATOR
Rebecca Blunn 0439 414 870
[email protected]
FAMILY SUPPORT ASSISTANT
Natalie Halls-Jones 08 8269 3122
[email protected]
Vice Chair
David Harrison
General Members
Bev Barber
Sami Glastonbury
Tony Jones
Ben Livera
Kerry Southwell
FINANCE OFFICER
Leah Hill
08 8269 3122
[email protected]
EVENTS OFFICER
Anna Price
08 8269 3122
[email protected]
ADMINISTRATION OFFICER
Kaye Hackett
08 8269 3122
[email protected]
REGIONAL REPRESENTATIVES
HeartKids SA/NT has a number
of Regional Representatives
throughout South Australia and
Northern Territory.
If you would like to be put in
contact with your local Regional
STAFF CURRENTLY ON LEAVE
Representative, please contact the
HeartKids Office.
ADMINISTRATION OFFICER
Kate Luke
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23
calendar
August
September
2, 9, 16, 23, 30
Southern Playgroup
3, 10, 17, 24, 31
Northern Playgroup
Darlington Children’s Centre
Playgroups SA Prospect
5
Teen & Tween Bowling Night
6
Bunnings Sausage Sizzle
7
Teddy Bears Picnic
6, 13, 20,27
Southern Playgroup
7, 14, 21, 28
Northern Playgroup
5
Whyalla
18
Bunnings Prospect
Darlington Children’s Centre
Playgroups SA Prospect
1, 8, 16, 22, 29
Southern Playgroup
2, 9, 16, 23, 30
Northern Playgroup
Port Augusta
Darlington Children’s Centre
Playgroups SA Prospect
4
Vida’s Golf Classic
5
Kelsey’s Family Fun Day
22
Gawler Coffee Catch up
Angaston Coffee Catch Up
Soul with Zest Cafe
City to Bay Fun Run
CBD-Glenelg
Darwin
KidsFlix
14
November
Penfield Golf Club
Wigley Reserve, Glenelg
Evanston Children’s Centre
October
3
Heart to Heart for Delilah Grace
Paxton Winery. McLaren Vale
Angaston Coffee Catch Up
Soul with Zest Café
TBC
HeartKids Christmas Picnic
HeartKids Family Fun Day
Wallaroo Football Oval
20
Adults with CHD Catch-Up
25
Gawler Coffee Catch up
27
Royal Darwin Hospital
HeartKids Office Enfield
Evanston Children’s Centre
18, 25
Southern Playgroup
19, 26
Northern Playgroup
Charity Ball
Darlington Children’s Centre
December
Playgroups SA Prospect
27
Gawler Coffee Catch up
30
Two Feet and a Heartbeat
Evanston Children’s Centre
2
The Fair du Tour
3
Tour de Francis
Lindsay Estate, Barossa Valley
Barossa Valley
Peewee’s on the Point
Bonython Park
For further information on any of the above events, please contact us on 08 8269 3122
If you would prefer to receive your magazine online via email - please contact HeartKids SA/NT via [email protected]
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24 heart heart
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(thank you, an official receipt will be sent)
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