heartkids news issue 1 2013

Issue 1 2013
NSW/ACT
MARCUS - OUR LITTLE SUPERMAN
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PAGE 6 HeartKids Awareness Month
PAGE 9 Family Support
PAGE 12 Regional Update
2 Issue 4 2013 | Contents
CONTENTS
Editor
David Rose
Design
Treena Appleby
Serena Manwaring
Contributors
Mardi Aplin
Rob & Laura Aspey
Allison Burgess
Bianca Ciccia
Dawn Everingham
Rebecca Johnson
Kim Mackie
David Rose
Karen Sherlock
Deb Taylor
OUR CHARTER
WHO WE ARE...
We are a children’s charity who are
concerned with the care of children born
with or who acquire childhood heart disease
(CHD).
OUR AIMS ARE...
To provide various forms of support for
parents and families of newly diagnosed
heart children and ongoing support for
parents, children and teenagers with CHD.
WE DO THIS BY...
• Providing opportunities for families and
individuals to network with people in a
similar situation via our regional coffee
mornings, family events, teen camp,
Christmas parties, fundraiser events and
our all important in-hospital family support
coordinators programme.
• Increasing community awareness of the
high incidence of CHD and its continuing
consequences.
• Liaising with medical and health
professionals so that a greater
appreciation may be gained from each
perspective.
• Encouraging and supporting research
programmes aimed at the prevention,
detection and management of CHD.
3 CEO Update
4 Swisse Color Run
5 Christmas at HeartKids
6 Awareness Month at HeartKids
7 News & Events
8 Member Update
9 Family Support News
10 Marcus’ Story
11 Tour De Ticker
12 Regional News
13 Volunteer Page
14 Bereavement Page
15 Our Team
DISCLAIMER
PLEASE REMEMBER THAT THE OPINIONS EXPRESSED IN ANY ARTICLE HEREIN REPRESENT
PERSONAL EXPERIENCE ONLY. MEDICAL DETAILS ARE SPECIFIC TO EACH INDIVIDUAL
CASE AND MAY NOT BE APPLICABLE TO ANOTHER CHILD. PARENTS WHO REQUIRE MORE
SPECIFIC INFORMATION SHOULD CHECK WITH THEIR CHILD’S OWN CARDIOLOGIST. ALSO,
PLEASE NOTE, THAT THE OPINIONS EXPRESSED IN THE ARTICLES HEREIN, ARE THOSE OF
THE AUTHOR AND DO NOT NECESSARILY REPRESENT THE BELIEFS OR OPINIONS OF THE
COMMITTEE, STAFF OR BOARD MEMBERS OF HEARTKIDS NSW INC. ALL ADVERTISEMENTS
IN THIS NEWSLETTER ARE PAID FOR AND ARE NOT ENDORSED BY HEARTKIDS. PERMISSION
TO REPRINT ANY OF THE PERSONAL STORIES IN THIS NEWSLETTER IS REQUIRED FROM THE
AUTHOR OR HEARTKIDS NSW.
CHIEF EXECUTIVE
OFFICER REPORT
FEBRUARY 2013
Since our Spring newsletter HeartKids NSW has successfully delivered our
Christmas campaign and have recently concluded our most successful Awareness
Month campaign yet with significant activity around NSW, raising awareness
through television, radio and print media and of course much needed funds to
contribute to our cause. We were also delighted to have 2 new board members,
Kevin Baker and Jamon Thomas, join our organization, both Heart dads. We
farewell Ronnie Tullipan and thank him for his contributions during 2012. January
2013 was a historic month for our wonderful organisation with the growth of our
in-hospital service provision at Westmead from 2 to 5 days of coverage, as part of
a 3 month trial.
With the announcement of a new board we have spent time reviewing our
strategic objectives through to the end of 2014 and will announce more of these
priorities over the coming months. This new strategy development complements
the continuation of programs such as ‘HeartKids Connect’ providing support and
programs to our regional members with our Roadshow program now visiting
Wagga Wagga and Orange and a second visit to Canberra in late March.
Would you believe it, the Tiny Tickers Ball preparations have already commenced
with the magnificent Westin Hotel confirmed as our new venue. Please mark
Saturday 31st of August in your diary. Early bird tickets will be promoted during
late March so please keep your eye on our website for more detail.
We send out a big thank you to all the runners who raised just over $100K for
HeartKids as part of the Swisse Color Run, and our special friends in Wagga who
raised over $80K for HeartKids NSW with the grueling Tour de Tickers bike ride.
These extra funds will be used to continue our work within our regional program,
increase our support of research and to fund the increased in hospital service
provision. We also send a thank you to our Cuppa supporters who together raised
$17K. THANK YOU!
In closing for this quarter, we farewell Karen Sherlock and thank her for her long
term commitment, 8 years to be precise, to our special cause and hope that we
see her in a member capacity at our family events. We also welcome back Lisa
Chamberlin from extended leave supporting William her HeartKid through his
recent long stay at Westmead Children’s Hospital.
Till next time ….warm regards,
David Rose
Chief Executive Officer
THANK YOU...
ACKNOWLEDGEMENTS
www.heartkidsnsw.org.au 3
to the following following
supporters of Heartkids NSW
Individual Supporters
Belinda & Ben Johnson
Brian & Christine Knapp
Brooke Davis
Carly Simpson
Chad Dobson
Claire Shrimpton
Dr Sidman
Jane Wilson
John Barrie
Judy Peak
Kathryn Kettlewell
Katie Henry
Lousie & Chad Davidson
Maria Vermunt
Melinda Winkler
Mr & Mrs Lawson
Raelene McLenaghan
Robert Thomas
Susan Alagich
Tiffany Sly
Wilkin Yau
Corporate/School Supporters
Abbott
Avene Cosmetics
Bauer Media
Cakes by Raewyn
Chargrill Charlies Lane Cove
Chargrill Charlies Wahroonga
Collette
Dolci D’oro Chocolates
Doltone House
Dreams in Colour
Fairy Meadow Demonstration School
Glenn Whitehall
Gloria Jean’s Hornsby
Harry’s Café de Wheels Liverpool
Kake Krumbs
Instyle Magazine
Intershape Hair
Luddenham Public School
Palmerston District Primary School
Paul Mitchell Haircare
PixiFoto
Primbee Public School
Ritchie’s
Rotary Club of Canberra
Singleton High School
SJA Accessories
St George Foundation
Supercare Property Services
Swan Chocolates
TCM Steering
The Australasian College of MHM
Educations & Training
The Dark Horse
Vodafone
1st Beecroft Guides
31 District Ladies Auxiliary Punchbowl
4 Issue 1 2013 |
Swisse Color Run
Images (Above): Kim & Dawn from HeartKids with Geoff Huegill and heartkids
William and Leo
Top: Polly & Waz
Below: Hammond & Chamberlin’s
After ‘Colour’
(Right) Top-Bottom: Veronica Brown & Suzi, Geoff Huegill, , Soph’s Team After
Colour, Heartkids Caitlin & Brittany, Team ‘Lionheart Hugh’
HeartKids were delighted to be chosen
as the charity of choice for the first
Swisse Color Run in Sydney. Over
20,000 keen colour enthusiasts signed
up to participate in this fantastic
event on Sunday 10th February. Once
registered, entrants were invited to set
up a fundraising page to raise funds
for HeartKids NSW, we had over 570
fundraisers raising over $100,000!!!!
Everyone had such a great day, Swisse
and their wonderful team of volunteers
did an amazing job ensuring that
everyone was well and truly coloured
both along the 5km route and at the
dance party at the finish line. Here are a
few photos of some of our families who
enjoyed a great day out.
Acknowledgements
Frozen Moments Photography
Glenn Nicholls
J.P Fisher
Rob Griffith
Images (clockwise): Jann from HKA with Stephen HKNSW and colorists,
Pammie Noble’s Team, Miranda & Aidan getting ready to start
www.heartkidsnsw.org.au 5
Sydney Christmas Party
With a change of venue we were ready
for a wonderful Christmas party and
we weren’t disappointed. It was very
hot on the day, over 40 degrees, but
the jumping castles, Looney Lou and
her face painting, food, tables and
chairs were all under a huge cover
and everyone was kept well hydrated
with drinks and ice. Santa made a big
entrance and was mobbed by all the
very excited children who sat patiently
and waited until he called their name
to receive a gift. Dave Rose our CEO
also took this opportunity to officially
present a number of our regular
hardworking volunteers with a plaque
and small token of appreciation. It
was a great opportunity for families to
come together and make new friends
and celebrate the year that was. Many
thanks to the great volunteers from
Johnson Controls and Dawn, Karen,
Kim and Jenny, the staff of HeartKids
who worked very hard to ensure our
Christmas party such a happy and
successful one.
Thanks to Mark Chamberlin from
Mulgoa Bakery for supplying the
beautiful Christmas cake, bread and
puddings for Rouse Hill market.
Rouse Hill Boutique
Christmas Markets
HeartKids Christmas appeal was
a fantastic success raising just shy
of $10,000 for our HeartKids and
families. The team headed out to the
Sydney Boutique Markets at Rouse
Hill on Saturday 15th and Sunday
16th December where our amazing
Christmas volunteers helped to man our
merchandise stall selling heart Christmas
goodies and puddings. We also had a
famous face (Justin Beiber) pop down
to the markets to say hi to our gorgeous
Charlotte who was working at the stall.
A huge thank you goes out to all the
Elves that came down and volunteered
their time this Christmas.
Lord Mayor’s New Years Eve Picnic
Some very lucky HeartKids families attended the Lord Mayors New Year’s Eve Picnic
with this year’s theme being Rock Stars & Pop Princesses. They all had a great time
with entertainment, food, face painting, bikes and games as well as spectacular
views of the nine o’clock fireworks over Sydney harbour. Here’s what some families
had to say about the night.
“We just wanted to thank you (Karen) and HeartKids for a wonderful night at
the New Year’s Eve Lord Mayors picnic. It was such a great event, and the kids
absolutely had a ball (and so did we, we felt like VIP’s). Thank you again, this was a
once in a life time opportunity that HeartKids have given to our family.” Diana Buric
“We just wanted to say a big thank you for the opportunity to attend the Lord
Mayors New Year’s Eve Picnic. We really enjoyed our night and had a great time!
Thanks again” The Klein Family
6 Issue 1 2013 |
Awareness Month
International CHD Day comes to Sydney CBD
Thank you so much to the superstar
have raised just shy of $8000 and raised
volunteers who helped out at our
our profile speaking on several local
Awareness Month CBD merchandise and
radio stations, and received national TV
fundraising day on 14th February. We
exposure on Sunrise Weekends. We look
had a very successful International CHD
forward to growing the opportunity and
Day, some people call it Valentine’s Day,
CHD awareness in 2014.
and met many amazing people that were
Above: Stacey and Bianca, The HeartKids
Valentine’s Day Team
affected by CHD.
Being our first year we are very proud to
CONGENITAL HEART DISEASE DAY AT CHW
Family Support Co-ordinators from The Children’s Hospital at Westmead, Kim
Mackie and Jenny Azzopardi celebrated International Congenital Heart Disease
Awareness Day with an information table and cupcake stall in the Hospital’s
Galleria.
Along with the help of Volunteers Vanessa and Mara, the ladies sold over 250
beautifully decorated and scrumptious cupcakes, macaroons, cookies and cake
pops. An amazing $1054 was made which was then donated to Edgar Stephen
Jenny and Kim man CHW cake stall
Ward.
Many thanks to Kirsty Cake Angels who organised donations from Charbella Cakes, Melicious Cake House, Get Your Cake On,
Sweet White Box, Creative Cake, It’s a Cake Thing and Cakes By Raewyn. Thankyou from the bottom of our hearts.
Kim and Jenny
High Tea
Sunday 24th February saw 102 lovely
ladies enjoy a High Tea at the Swissotel
Sydney. On arrival our guests were
entertained by Glenn Whitehall,
contestant in The Voice 2012 and then
enjoyed a beautiful buffet High Tea.
There was a silent auction, raffle and
lucky door prizes with some beautiful
jewellery, chocolate hampers and
handbags available, along with a goody
bag packed with lots of surprises. We
raised $4700 from the afternoon.
Images: (Above) High Tea at Swissotel (Right)
Glen Whitehall & Bianca Ciacca
Brighton Fundraising
Luncheon
www.heartkidsnsw.org.au 7
On 8th December, 2012 over 100 ladies (and 1 male!) enjoyed a wonderful
fundraising luncheon organised by Maria Vermunt at The Grand Roxy at
Brighton Le Sands. It was a joyous occasion with great food and great
conversation, with over $5K raised by fabulous raffles and ticket sales. Maria
spoke about her son Ellis, his heart condition and his upcoming March 2013
surgery. Kim spoke about HeartKids, her role as FSC and her HeartKid Liam. We
thank Maria and her wonderful supporters, for their contribution towards our
special cause.
Thank You Precision Landscape
Our wonderful supporter Martin Saunders from Precision Landscape
delivered a spectacular garden to Dwane Goodman whom generously
purchased the package at the 2012 Tiny Tickers Ball. We thank all of
the contributors to the prize: Alpine Nursery, Turtle landscape supplies,
Eco Plant, Neverstop Irrigation, Tank Works, Gretchs Turf and of course
Precision Landscape for their generous contributions whilst also bringing
the prize to life!
Zipper Warrior Dinner
To celebrate Awareness month in Newcastle we held our first
Charlestown) and Garry Edwards (Member for Swansea),
Annual Fundraising Dinner at the Belmont 16 Foot Sailing
as well as Garrys brother, Ken Edwards. As a child, around
Club on Saturday 23rd of February 2013. The Belmont 16 Foot
fifty years ago, Ken was the only survivor of the first five
Sailing Club provided a wonderful three course meal, and was
open heart surgeries performed at Camperdown Children’s
a fantastic location for the event with ceiling to floor windows
hospital.
overlooking the magnificent Lake Macquarie
We would like to thank
Our 60 guests enjoyed a fun filled evening of raffles, games
everybody involved in the
and auctions.
dinner, and we’re hoping to
Kevin Baker (HeartKids Director) was our MC for the night
make it bigger and better for
and shared his journey as a heart parent, and our guest
next year – save the date,
speaker Amy McDonough provided all with a fantastic insight
8th February 2014!
of living with a congenital heart defect. We were fortunate
Allison Burgess, Kevin Baker
to be joined by state MPs Andrew Cornwell (Member for
and Rebecca Johnson
Andrew Cornwell, Kevin Baker &
Allison Burgess
8 Issue 1 2013| Member Update
Member Update
Who was in at the Children’s
Hospital Westmead (CHW)?
Charlie Ferguson, Faith Power, & Chloe
Karsten, were all in for surgery.
Sarah Gerlach had her Fontan surgery.
Daniel Appleby had his Glen surgery.
Sam Attwood had his surgery at
Westmead Hospital.
Rijen Shrestha had his surgery and due
to complications had an extended stay
in CHW.
William Chamberlin had his Fontan
surgery and was discharged, but due
to complications was readmitted mid
December and had an extended stay
celebrating Christmas, New Year ,his
6th birthday and a return to school (the
hospital school) on ESW.
Both Rijen and William were discharged
on the same day and we wish them all
the best for a continued recovery.
Emma Peck had her Fontan and was
home in quick time.
Addison Ansell was treated for an
infection in her heart. After an extended
stay she has been discharged.
Jacob Traynor and mum Peta have
finally been discharged from CHW
after a long 6 months. We wish them
all the very best for Jacob’s continued
improvement.
Lachie Burgess had his catheter.
Ronan Bishop had his procedure and
after a complication, made it home in
good time.
Lily Haskins was in for a procedure.
Bodhi Harvey was in for a procedure
and then 1 month later mum Amanda,
dad Chris and big sister Taylor popped
in for a visit to the retreat room and see
Kim.
Ethan Yueng and mum Miki popped into
see everyone in ESW
Levi Mc Cormack, mum Karina and little
sister Keshia came in to help decorate
the ESW Christmas tree. Levi was
admitted for a short stay recently.
Kim bumped into Leonie and Holly
Saunders on their way to the Heart
Centre for Children.
The Jacksons – Craig, Tashan, Memphis
and Cayless popped in to say hi to Kim.
Erin Kennedy and Hannah came by
the retreat room for a quick catch up.
Emily, Jason and Amy Crocker popped
in to see Kim after a check up. Meg and
Kennedy MacKenzie came to the CHD
Awareness afternoon tea on Feb 14th
in CHW. The Holt family with heartkid
Emily also came to say hi.
Who was in at Sydney
Children’s Hospital? (SCH)
Zoe Heyhorn was back and forth to
SCH in November & December, she had
her Gastrostomy removed and started
school this year tube free! Laycee
Davidson was back in December.
We congratulate Zoe Heyhorn on
starting Kindergarten this year!
If you would like to send in a photo of
your HeartKid starting school please
send to dawn.everingham@heartkids.
org.au
Meet Taylor...
Heartkid Will Chamberlin and Karen Weir
with ‘Taylor’
Recently HeartKids NSW was the recipient of a $1000 grant from the Northern
Beaches Social Riders. We had been approached by Karen Weir from Child Life
Therapy at CHW to fund the purchase of a therapy doll, Taylor, which desensitizes
children by letting them see the many different procedures that our heartkids have
to endure. Taylor has a number of velcro faces showing different emotions and also
velcro upper torsos with sternotomy scars and drain holes, pacemaker pockets, an
embroidered heart with cath line and other play sets of nasal prongs, O2 masks, BP,
oxymeter, central line, dressing changes etc.
A number of youngsters are having sessions with Karen and Taylor prior to their
surgery and patients like Will Chamberlin (pictured) enjoyed changing Taylors
dressing in preparation of having his own dressings changed.
HeartKids is extremely pleased to have been able to assist Karen and her work as
anything that can reduce our children’s anxiety about surgery or coming to hospital
is wonderful.
Family Support News
Happy New Year to all our families and a
warm welcome to all our new families.
We hope that 2013 is a good year for
everyone. Lots of excited heartkids started
Kindergarten and some made the big move
on to High School this year. What wonderful
milestones for you all to reach, we hope you
enjoy life in your new schools.
At the Children’s Hospital Westmead , the
Edgar Stephens Ward went ’troppo’ for their annual party
day with monkeys and elephants wandering up and down the
corridors looking after our heartkids. As usual Gabbie and her
wonderful staff went all out decorating the ward and even the
Christmas tree was covered in animal print baubles. A great day
was enjoyed by staff, patients and their families.
The switch to afternoon hours 1 to 3pm
every weekday in the retreat room on the
Edgar Stevens ward (CHW) is working well
with many families wandering down after
lunch. For those who haven’t yet met her,
we would like to introduce Jenny Azzopardi
as our 3rd Family Support Coordinator.
Jenny is mum to five children and her
heartkid Dominic is nine years old. She is a
midwife at Westmead Hospital and has also been volunteering
at HeartKids coffee mornings for the last 8 years. Jenny is in
the retreat room Monday and Friday and Kim is in Tuesday
to Thursday. We can also come to your bedside if requested
through your nurse.
New Member Welcome
A big welcome to all of our new members
The Cheung & Yau family from Eastwood, with heartkid Christopher,
who has AVSD and Pulmonary Atresia.
The Goodwin family from Cronulla, with heartkid Lennox, who has
Long QT Type 2 syndrome.
The Johnson family from Jewells, with heartkid Oska, who has TGA,
pulmonary stenosis, and a VSD.
The Henricks family from Kingswood, with heartkid Leo, who has
HLHS
The Chen & Hsu family from Currans Hill, with heartkid Chia-Yu.
The Davis family from Aberglasslyn, with heartkid Mason, who has
VSD, TGA, Situs Solitus, Pulmonary stenosis, PDS, PFO & Dextrocardia.
The Mitchell & Henry family from Stanhope Gardens, with heartkid
Cayden, who has TGA.
The Sly & Allsop family from Cremorne, with heartkid Dempsey, who
has ASD & Ebsteins Anomaly.
The Shrimpton family from Horsley, with heartkid Hugh, who has
Acyanotic Tetralogy of Fallot.
The Davies family from North Nowra, with heartkid Lilly-Rose.
The De Giorgio family from Forestville, with heartkid Charlie, who
has incessant infant ventricular Tachycardia with cardiomyopathy.
The Ball family from Trangie, with heartkid Jazzlyn, who has VSD,
AVSD.
The Wright & Deignan family from Richmond, with heartkid Bentley,
who has TGA.
The Kennedy family from Kellyville, with heartkid Hannah, who has
an Arrythmia.
www.heartkidsnsw.org.au 9
February was a busy month with lots
going on for Awareness Month. Many
thanks to all who supported HeartKids
at this time. Stay safe and stay well. Kim
(CHW)
As this will be my last newsletter as
one of the family support team for
HeartKids NSW I wanted to say a special
good bye and thank you. I have had many wonderful years
working for HeartKids NSW and I have met many amazing
families with the strongest and bravest HeartKids that I will
remember forever. I am sad to leave my fellow colleagues
who have been the best people to work alongside ever
as well as very special friends! To all the families I have
met please stay in touch and let me know how all those
wonderful children are growing up (you’ll find me on
Facebook) Thank you to everyone for a fantastic eight years.
Take care, Karen Sherlock x
ATTENTION
Please be advised for all families coming into CHW or SCH
HeartKids FSC’s are no longer advised of your admission
and we rely on you contacting us by email, Facebook,
SMS or Phone: CHW/SCH Kim 0406 424 627/ Jenny 0406
424 620
You can tell your nurse you’d like to see someone
from HeartKids and we’ll come by with a care bag and
vouchers.
This is as a result of changes to hospital policies regarding
privacy and confidentiality.
The Kettlewell family from Oakhurst, with heartkid Azriel, who has
Tetralogy of Fallot.
The Lampe family from Sefton, with heartkid Thomas, who has
TGA, VSD and ASD.
The Peters family from Glenwood, with heartkid Thomas, who
has 2nd degree heart block.
The Alagich family from Wheeler Heights, with heartkid Aidan,
who has Tetralogy of Fallot.
The Parker family from Muswellbrook, with heartkid Maelie, who
has Tetralogy of Fallot.
The Thomas family from Oatley, grandparents to Luca.
The Harris-Coulon family from Port Macquarie, with heartkid
Aiden, who has Pulmonary Atresia with VSD.
The Shrestha family from Parramatta, with heartkid Rijen, who
has Aortic Atresia with multiple VCD’s.
The Ansell/Horan family from Wellington, with heartkid Addison,
who has Tetralogy of Fallot.
The Gibbons family from Baulkham Hills, with heartkid James,
who has Tetralogy of Fallot.
The Baldry/Mortlock family from Giralang, with heartkid Kaleb,
who has TGA.
The Cairns family from Warabrook, with heartkid’s Luka-Angel &
Jazziah, who have restrictive Cardiomyopathy.
The Buckley family from Punchbowl, with heartkid Phoenix, who
has DORV, right side isomerism, ASD & VSD.
The Gardiner family from Theodore, with heartkid Jade, who has
DORV with severe pulmonary stenosis.
Marcus’ Journey
10 Issue 1 2013| Marcus’ Journey
On Christmas morning we were
told not to get our hopes up,
that there was little chance that
Marcus would make it through.
Very slowly he became a little
better and he was extubated
again and on C-PAP.
It’s surprising how much more
relaxing your second pregnancy
is. All went well during the
pregnancy and Cameron’s
little brother, Marcus, arrived
exactly on his due date
of 16 November 2011 at
Campbelltown Hospital.
He did so well in the first few
hours of life, until later the next
day when he wouldn’t eat and
began breathing too fast. He
was quickly identified as having
a heart problem and would
require immediate transport to
Children’s Hospital Westmead
(CHW).
Over the course of the next
4 months our roller coaster
journey continued; He would
get better enough to return to
the ward and then he would
become sick again and rushed
back to PICU.
Finally at the end of February,
we were rushed back to PICU,
this time the left ventricle of
his heart was not functioning
properly. A new medication was
started for Marcus and we just
had to wait and hope that the
medication would work.
isolation ward!
On 24 May 2012 we finally
came home. Marcus no longer
needs the bi-pap and even
though he still has 2 heart
medications twice each day he
is finally doing all the things
that little boys get to do. Our
little superman turned 1 in
November!
This has been the hardest
hurdle our little family has
ever faced, however we would
never have made it through
without the endless support
and dedication from our loving
family, friends and dedicated
teams at the CHW.
A special thank you to
HeartKids who have been with
us from the beginning of our
journey and provided us with
information, support, guidance
and financial assistance. As
a token of our appreciation,
our family held a small
fundraising event in Kiama,
Marcus spent his first month
the ‘Zippa Dinna’ which raised
of life in the Grace Centre for
over $11,000 for HeartKids!
Newborn Care where he was
An incredibly dedicated
diagnosed with several heart
organisation, thank you.
conditions the major ones
Marcus remained intubated for Deb Taylor (Heartmum)
being; critical aortic stenosis,
the whole month of March and
mitral regurgitation and left
was successfully extubated on Excerpt from original. Please
ventricular dysfunction. He
1 April 2012 which was also his visit our website for full story
would require various heart
100th day in PICU. The staff in
www.heartkidsnsw.org.au
surgeries throughout his life
PICU were fantastic and tried
however immediate action had to help make things as normal
to be taken to correct the aortic as possible by letting us bath
stenosis.
Marcus and take him for walks
around the hospital and in the
He appeared to do well after
park when we could.
the catheter. After only 3 days
at home though he became
After 5 months, Marcus finally
unwell again. On 23 December reached 5kgs and he was doing
we said goodbye to our baby
well enough to go back to the
boy, who was gone for over
ward again. On the day that we
7 hours and when he arrived
were scheduled to go home
back he was on ECMO and had Marcus got bronchiolitis and
a pacemaker.
we spent the next week in the
Tour De Ticker
www.heartkidsnsw.org.au 11
Wagga Wagga Regional Representatives Scott and Katrina Brown decided to do a little
fundraiser to raise some funds and awareness for HeartKids NSW, their original target was
$10,000….now 4 months later the total has exceeded $87,000!!!!
“Our 15 amazing riders tackled
the magnificent NSW Snowy
Mountains. Over the 5 days they
were challenged by 670kms of
riding.
Our Team conquered their
own challenges to raise funds
for Awareness, Research and
Support into CHD for Local and
State families.” says Katrina.
CEO David Rose, Operations
Manager Dawn Everingham
and Family Support Coordinator
Kim Mackie visited the team in
Wagga to personally thank them
for their fantastic effort.
The HeartKids team hosted
a thank you cocktail evening
for the team members and
supporters of the Tour de Tickers
event and presented each rider
with a personalised canvas to
thank them for the wonderful
contribution.
Images (clockwise from above): Tour De Ticker riders, On the road, Scott Brown, Dawn
Everingham (HeartKids NSW), Katrina Brown, Kim Mackie (HeartKids NSW), David Rose
(HeartKids NSW) Bottom photo: Tour De Ticker team
meet and share their stories
with other families in their area.
The inaugural Tour de Ticker
is one of the most successful
community fundraising events
for HeartKids NSW and we
thank the team of riders, their
support crew and especially
The following day HeartKids
Scott & Katrina for their
hosted a family BBQ in the
inspiring efforts.
beautiful Collins Park, the local
For more information on Tour
members were treated to a great de Ticker go to
day of fun and the chance to
www.tourdeticker.com
Above: Jack Campbell recently won
4 gold and 2 silver medals at The
Transplant Games
12 Issue 1 2013| Regional News
REGIONAL NEWS
The Central West and Macquarie Areas joined forces this year for our Xmas party and we all spent the
day together at the Western Plains Zoo in Dubbo. We had a fantastic day with wonderful weather and
I think the monkeys were putting on a show for us all. Some of us rode our bikes, others drove and we
had a buggy for all the food and drinks which also seemed to be a hit with the children who all wanted
to have a ride. It was great to get together with the Macquarie heartkids and their families and for
all the children to make some new friends. We had all morning exploring the Zoo, followed by a BBQ
lunch and fantastic cake pops for desert made by Sue Dean and all the children received a present from
HeartKids. I have to thank the Western Plains Zoo for looking after us and I am so pleased that I had a
chance to meet all the wonderful families in Dubbo. Thank you all for coming.
Stay Healthy
Mardi-Central West Representative
NEWCASTLE CHRISTMAS PARTY
We had a great time at the HeartKids Christmas party, Kiwanis did a wonderful job
putting on a lovely spread. The children had their faces painted and we had a guy who
made anything and everything out of balloons - he was fantastic. There were lots of
games being played by all the kids and parents. Santa delivered some fantastic presents
to all the children who really seemed to enjoy the day.
We met quite a few new families and they were very thankful for such a wonderful day.
Everyone had a great time and it was great to see all the families with their beautiful
children. Many thanks to Kiwanis for all their support.
Rebecca Johnson & Allison Burgess
Newcastle Regional Representatives
NEWCASTLE AWARENESS MONTH COMMUNITY TABLE
Saturday, 16th February brought the Newcastle HeartKids families together to
celebrate Awareness Month. We set up a community table at the Stockland Green
Hills Shopping Centre and were positioned next to Donut King and Michel’s Patisserie
who kindly supplied us with morning coffee. During the day we sold merchandise,
raffle tickets and spoke to many current and new HeartKids families about the support
HeartKids NSW provides our families in and out of hospital.
To celebrate CHD Awareness month we meet with some of our local families for
afternoon tea at the nearby Donut King who supplied us with donuts, milkshakes and
kindly let us use their tables and chairs. I would like to thank the families for coming
along during the day it was lovely meet you all, and a special thanks to the Korbi
family for helping with the community table and for sharing your story with the local
community.
Allison Burgess and Rebecca Johnson
Newcastle and the Hunter HeartKids NSW Representatives
REGIONAL REPRESENTATIVES
Thank you to Amanda Harvey who is stepping down as the Central coast regional representative. Amanda has been a fantastic
regional representative over the past few years and we thank her for all she has done to bring the Central Coast families
together, she has been an amazing support to many members over the years. We now welcome Veronica Brown to the role as
new Central Coast regional representative. Veronica is well known to the families on the Central Coast as she has opened her
home to them for social catch ups on many occasions.
To contact Veronica please call 0409071171 or email [email protected].
We would also like to say a big thank you to Tracey Crutcher who is stepping down as the Mid North Coast regional
representative.
www.heartkidsnsw.org.au 13
Volunteer
PROFILE
Name: Position:
Allison Burgess
Regional Representative – Newcastle
Can you tell us about yourself and your family? I am mum to Damon and Lachlan and fiancé to Kevin Baker. Damon has just
turned 10 years old and has started a new school this year. Lachlan is my HeartKid and he has recently turned 3 years old.
Lachlan has Pulmonary Artesia, VSD and MAPCA’s. He has had three open heart surgeries, a number of cardiac catheters and
many other interventional procedures. Lachlan will also have many more surgeries as he gets older.
Why did you become involved in HeartKids? I became involved with HeartKids because I wanted to find information and
support for Lachlan’s condition and to meet and learn from other families who have had experience with congenital heart
defects.
Why is HeartKids important to you? HeartKids is important to me because it provides me with the opportunity to meet
heart families to share our story, it is an outlet that I can use and trust to advocate and awareness of Lachie’s condition and
the many other heart conditions.
What do you enjoy about your involvement with HeartKids? Sharing Lachlan’s story, learning from and meeting heart
families. I have learnt so much in the past 3.5 years about the variety of experiences many families had have with their
heartkid.
What do you like to do in your spare time? I enjoy sewing, shopping, cooking and taking the kids out on drive days with a
group of Mini (car) owners.
Favourite food: Dark Chocolate
Favourite music: Nora Jones
Early bird or night owl? Neither!
What albums would you take with you on a deserted island? Nora Jones, Fleetwood Mac Rumours, Beatles Red and Blue
album and Beastie Boys Intergalactic.
The last time I laughed out loud was... Watching the BBC “Walk on the Wildside”
Best piece of advice I’ve ever received: We can’t always be responsible for what life throws at us, but we can always be
responsible for how we react to any situation even the most traumatic.
My favourite sound in the world is: The waves crashing on the beach - I find the beach very soothing.
If you could have one superhuman power, what would it be? Teleportation
THANK YOU TO OUR VOLUNTEERS
HeartKids NSW would like to thank the following people who have volunteered their time over the past few months:
Jerry Abad, Habib Ajaka, Laurie Alexander, Julia Barker, Jeanette Barrie, Beau Casson, Julianne Chase, Gracie Collison, Camilla
Cuming, Peter Dalla, Akhil Demurari, Kylie Gard, Daniela Gerlach, Robert Gilchrist, Dave Jeffrey, Stacey Keenan, Kiran Kotecha,
Sara-Jane Leon,Irene Lewis, Dragana Malcaus, Alvin Matthews, Alvin Matthews Jnr, Angelina Matthews, Selina Matthews,
Debra McMillan, Debbie Miranda, Kristy Peters, Kristen Renwick, Alex Repin, Deb Taylor, Kye Taylor, George Wells, Karen
Wells
14 Issue 1 2013| Bereavement Page
Heart Angel Macie
Our beautiful girl, Macie Jane Aspey was
born at Newcastle Private Hospital on 27
February 2009, it wasn’t until she was 3
days old when she went into respiratory
distress that we realised she was a very
sick baby. She was quickly transported
to John Hunter Hospital then flown by
NETS to Children’s Hospital Westmead.
The first few days went by with a blur,
so many doctors and nurses looking
after her and a lot of new terminology
that we’d never heard of. Macie’s
heart was not formed properly, she had
many issues and was diagnosed with
Hypoplastic Left Heart Syndrome. At
just 5 days old our precious little girl had
her first open heart surgery. It was a bit
of a shock for us when we first saw her
after her surgery but we knew she was
in the best care possible and trusted our
baby’s life with the experienced doctors
and nurses at CHW.
Macie didn’t recover well, she had
several complications from her heart
condition and the next few weeks were
full of ups and downs for her including
more surgeries. We were by her side the
whole time and it was heartbreaking to
see her going through these procedures
but she was a brave girl who took all
that was thrown at her.
After 4 weeks in the Intensive Care Unit,
Macie was transferred to Edgar Stephen
Ward where over the next 3 weeks she
grew a little bit stronger and we learned
how to care for her so we could take her
home. We both learnt how to put in her
feeding tube and feed her through it,
as she wasn’t strong enough to drink a
bottle on her own.
Finally at 7 weeks of age we were able
to bring our princess home. Looking
after Macie was a full time job, keeping
up with her Cardiologist – Dr Steve
Cooper, Paediatrician – Dr Michael
Lonergan, District Nurse – Michael
Lawler as well as weekly visits to CHW
for check ups, but as the parents of this
special girl we wouldn’t have had it any
other way – if it meant she could be at
home with us and her big brother Cale
we would do anything!
Over the 8 weeks Macie was home, we
cherished her as all parents do their
precious babies, she was probably the
most photographed baby ever! And we
loved to dress her in beautiful clothes.
Cale loved helping with bath time and
her gave her the nick name “Macie
Girl” – this is how she was known to
everyone.
At 15 weeks of age Macie became very
ill and we rushed her to John Hunter
Hospital and again she was flown by
NETS to CHW. She was unable to keep
up the fight and sadly passed away, our
hopes and dreams for her were crushed.
There is no way we can explain how we
felt at that time and even now nearly
4 years later the grief is sometimes so
overwhelming. I don’t think we will ever
stop grieving for our precious little girl
but we continue to live our lives day by
day with hope and love. We have had a
third child, Tanner MJ Aspey – MJ after
his big sister Macie Jane.
We are so proud of our Macie Girl, she
was such a brave baby girl and she is
always in our thoughts and hearts.
We would like to thank HeartKids for
their support during our stay at CHW,
our time at home with our baby girl
and their continuing support since her
passing.
Rob and Laura Aspey
Rob and Laura have kindly allowed
HeartKids to use Macies’ photograph
on our memorial envelopes, a lasting
legacy from such a short life.
New HeartKid Bereavement Service
HeartKids NSW will soon be able to offer financial help for members with Heart Angels by making a number of “gap”
payments for Medicare approved bereavement counselling services (criteria apply). We hope to have this program running
shortly and will advise when it is available.
Heart Angels
We wish to pass on our deepest sympathies to:
The Parnell family in loving memory of Theodore Alexander.
The Ryan family in loving memory of Emma Claire.
We are thinking of all families whose loved ones anniversary falls at this time including these Heart Angels......
Jake Collaros
Ayden Peychers
Willow Spring Lewis
Hamish Howard
Clara Manalo
Phillipa Raine
Andrew Bennett
www.heartkidsnsw.org.au 15
OUR TEAM
HEARTKIDS NSW BOARD 2012/13
REGIONAL REPRESENTATIVES
Chairperson
Jayne Blake
North Sydney Representative
Donna Hammond
[email protected]
0412 924 582 or 9969 4951
Vice Chairman
Georgia-Kate Schubert
Secretary
Joe Murphy
Treasurer
Jackie Giles
Public Officer/HR Advisor
Erron Palmer
Directors
Jamon Thomas
Kevin Baker
Stephen Snowden
EMPLOYEES
Chief Executive Officer
David Rose
[email protected]
0408 501 931
Operations Manager
Dawn Everingham
[email protected]
0420 364 125
Event and Fundraising Manager
Bianca Ciccia
[email protected]
0404 113 049
Administration & Special Projects Coordinator
Lisa Chamberlin
[email protected]
0406 424 511
Fundraising Coordinator
Natalea Litchfield
[email protected]
0423 737 654
Family Support Coordinator (Westmead)
Kim Mackie
[email protected]
0406 424 627 or 02 9294 0800
Family Support Coordinator (Westmead)
Jenny Azzopardi
[email protected]
0406 424 620
Mid-South Representative
Vacant
Hills District Representative
Daniela Gerlach
[email protected]
0409 912 496
Eastern Suburbs Sydney
Vanessa Erickson
[email protected]
0407 064 262
Central Coast Representative
Veronica Brown
[email protected]
0409 071 171
Sutherland Representative
Shantelle O’Leary
[email protected]
02 9576 1175
Wollongong Representative
Sharon & Michael Rooke
Sharon 0412 642 783
Michael 0418 484 765
[email protected]
South West Sydney Representative
Kim Phillips
[email protected]
0433 992 092
Illawarra South Representative
Vacant
Coffs Harbour Representative
David Stevens
[email protected]
0435 776 655
Newcastle Representatives
Kevin Baker
[email protected]
0408 588 565
Wagga Representative
Katrina Brown
[email protected]
0408 362 044 or 02 6926 6247
Allison Burgess
[email protected]
0421 332 968
Hunter Representative
Rebecca Johnson
[email protected]
0411 441 857 or 02 4966 2783
New England New England Representatives
Alison and Warren Sullivan
[email protected]
0427 623 773
Mid-west Sydney
Vacant
CONTACT US
HeartKids NSW
PO Box 170
Westmead Hospital,
Westmead, NSW 2145
www.heartkidsnsw.org.au
02 9294 0800
Central West Representative
Mardi Aplin
[email protected]
0416 112 885
ACT Representatives
Sarah Henderson-Smith
[email protected]
02 6242 7551
Mid North Coast Representative
Tracey Crutcher
[email protected]
0403 938 540
Yes! I’d like to become a supporter of
Complete this form & post to:
HeartKids NSW PO Box 170, Westmead Hospital
Westmead NSW 2145
HeartKids NSW is a registered charity and our services rely heavily
on the wider community to be volunteers, sponsors and donors.
I would like to make a donation of $___________
(Thank you, an official receipt will be sent)
Cheque
Money order - Payable to ‘HeartKids NSW’
Visa
Mastercard
Credit Card No:
Please send me more information about HeartKids NSW and in
particular:
Becoming a Volunteer
Leaving a gift in my will
Making a regular gift through my bank
Participating in fundraising events
Gifts can be sent to HeartKids NSW at the above address. Please
complete the credit card authority and post.
If you would like to contact us please call 02 9294 0800 or
E-mail: [email protected]
Expiry Date: /
Cardholder Name:
Signature:
Mr/Mrs/Ms
Street Address:
Suburb/Town:
State:
Postcode:
CVC No:
CALENDAR OF EVENTS
MOTHER’S DAY LUNCH &
PAMPER
Thursday 02nd May 10am2pm
Children’s Hospital Westmead
RSVP Jenny Azzopardi
E: jenny.azzopardi@heartkids.
org.au or 0406 424 620
CENTRAL COAST COFFEE
MORNING
Tuesday 23rd April 10am-12pm
Springfield
RSVP: Veronica Brown
E: [email protected]
NEWCASTLE COFFEE
MORNINGS
McDonalds Edgeworth
24th April, 29th May, 26th June
10.30am
RSVP [email protected]
or 0421 332 968
TINY TICKERS BALL 2013
Save the date - Saturday 31st August, Westin Hotel Sydney.
Earlybird Tickets now available, please go to our website for details
www.heartkidsnsw.org.au
If you would like to help out on the committee for this year’s ball please contact
Bianca Ciccia on 0404 113 049 or [email protected]
RS & SUPPORTERS for
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