ZALI’S STORY
ZALI'S STORY - HeartKids New South Wales
ZALI'S STORY - HeartKids New South Wales
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Issue 2 2013<br />
NSW/ACT<br />
<strong>ZALI’S</strong> <strong>STORY</strong><br />
Find us on Facebook<br />
PAGE 10<br />
PAGE 4<br />
PAGE 6<br />
PAGE 12<br />
Family Camp<br />
Tiny Tickers Ball<br />
Regional News
2 Issue 2 2013 | Contents<br />
CONTENTS<br />
Editor<br />
David Rose<br />
Design<br />
Treena Appleby<br />
Serena Manwaring<br />
Contributors<br />
Jenny Azzopardi<br />
Allison Burgess<br />
Lisa Chamberlin<br />
Bianca Ciccia<br />
Dawn Everingham<br />
Natalea Litchfield<br />
Kim Mackie<br />
Deanne Maunsell<br />
David Rose<br />
OUR CHARTER<br />
WHO WE ARE...<br />
We are a children’s charity who are<br />
concerned with the care of children born<br />
with or who acquire childhood heart disease<br />
(CHD).<br />
OUR AIMS ARE...<br />
To provide various forms of support for<br />
parents and families of newly diagnosed<br />
heart children and ongoing support for<br />
parents, children and teenagers with CHD.<br />
WE DO THIS BY...<br />
• Providing opportunities for families and<br />
individuals to network with people in a<br />
similar situation via our regional coffee<br />
mornings, family events, teen camp,<br />
Christmas parties, fundraiser events and<br />
our all important in-hospital family support<br />
coordinators programme.<br />
• Increasing community awareness of the<br />
high incidence of CHD and its continuing<br />
consequences.<br />
• Liaising with medical and health<br />
professionals so that a greater<br />
appreciation may be gained from each<br />
perspective.<br />
• Encouraging and supporting research<br />
programmes aimed at the prevention,<br />
detection and management of CHD.<br />
Page 3<br />
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Page 5<br />
Page 6<br />
Page 7<br />
Page 8<br />
Page 9<br />
Page 10<br />
Page 11<br />
Page 12<br />
Page 13<br />
Page 14<br />
Page 15<br />
CEO Update<br />
Family Camp<br />
News & Events<br />
Tiny Tickers Ball<br />
City 2 Surf/Cuppa for<br />
HeartKids<br />
Member Update/New<br />
Member Welcome<br />
Family Support<br />
Zali’s Story<br />
HKA News<br />
Regional News<br />
Heart Champion<br />
Bereavement Page<br />
Our Team<br />
DISCLAIMER<br />
PLEASE REMEMBER THAT THE OPINIONS EXPRESSED IN ANY ARTICLE HEREIN REPRESENT<br />
PERSONAL EXPERIENCE ONLY. MEDICAL DETAILS ARE SPECIFIC TO EACH INDIVIDUAL<br />
CASE AND MAY NOT BE APPLICABLE TO ANOTHER CHILD. PARENTS WHO REQUIRE MORE<br />
SPECIFIC INFORMATION SHOULD CHECK WITH THEIR CHILD’S OWN CARDIOLOGIST. ALSO,<br />
PLEASE NOTE, THAT THE OPINIONS EXPRESSED IN THE ARTICLES HEREIN, ARE THOSE OF<br />
THE AUTHOR AND DO NOT NECESSARILY REPRESENT THE BELIEFS OR OPINIONS OF THE<br />
COMMITTEE, STAFF OR BOARD MEMBERS OF HEARTKIDS NSW INC. ALL ADVERTISEMENTS<br />
IN THIS NEWSLETTER ARE PAID FOR AND ARE NOT ENDORSED BY HEARTKIDS. PERMISSION<br />
TO REPRINT ANY OF THE PERSONAL STORIES IN THIS NEWSLETTER IS REQUIRED FROM THE<br />
AUTHOR OR HEARTKIDS NSW.
www.heartkidsnsw.org.au 3<br />
CHIEF EXECUTIVE<br />
OFFICER REPORT<br />
JUNE 2013<br />
I start this quarter’s update sending our best wishes to Kim Mackie and her son Liam who<br />
are going through a difficult time with surgery at Westmead Hospital and a long recovery<br />
at home. Kim will be checking out Facebook regularly so please send your thoughts to this<br />
very important member of our team.<br />
With Liam moving his treatment from the Children’s Hospital to the Adult’s it is timely to<br />
mention transition. Dr Celemajer (RPA) is a leader in transition support for CHD patients<br />
and has requested that HeartKids NSW assist in facilitating the development of a register<br />
of all patients who will require transition, to (i) start preparing the family for transition<br />
(ii) allow the pediatric cardiology team to effect transition and (iii) to follow the patients<br />
until they have been successfully transitioned to a ACHD team/centre. If you would like<br />
to be involved in this program please contact HeartKids NSW or contact RPA CNS (nurse<br />
specialist) on (02) 95157604.<br />
This quarter has also allowed the delivery of some wonderful initiatives and funding to<br />
further our family support and research priorities such as our family camp which was held<br />
on the 15th March and again proved to be a wonderful success with 24 families attending a<br />
weekend escape fully funded by HeartKids NSW. See page 4 for the full report.<br />
This was complemented through the recent employment of a specific Regional Coordinator<br />
who is totally focussed on growing our support around greater NSW. Please welcome<br />
Allison Burgess to our team. Allison is based in Newcastle, is a Heart mum and her partner<br />
Kevin is a member of our board. Allison is currently working with two other regions to<br />
launch the second phase of our ‘HeartKids connect’ program. As you know we have been<br />
conducting Regional Roadshows over the last 8 months and now we are delighted to<br />
announce that we are funding three Regional Officers in Newcastle, Wagga Wagga and<br />
Orange with a focus on clinic links, greater family support growth and raising awareness<br />
and funds through HeartKids campaign leverage.<br />
Our bereavement program is also now moving into phase 2. Complementing the dedicated<br />
page in our newsletter and on our website we are humbled to launch our counseling<br />
support program providing ‘gap funding’ for 6 psychology sessions for the families of our<br />
special heart angels, through the GP health plan. Please see our website for greater details.<br />
And with budget for next year now approved I am delighted to announce that we have<br />
approved a 60% increase in research funding which will be tagged to the national Grants<br />
in Aid program. In recent weeks in hospital we have provided some direct ward support to<br />
the Edgar Stevens Ward at the Children’s Hospital Westmead, with the provision of 7 new<br />
chair beds making our heart parents stay that little bit more comfortable when in hospital.<br />
To fund these wonderful support initiatives we rely heavily on our members and supporters<br />
through a number of our fundraising programs such as; the Tiny Tickers Ball on the 31st<br />
August at the high class Westin Sydney, we have secured 10 gold places at this years City to<br />
Surf 12th August which allow a front of the pack start, and the launch of our vital regular<br />
giving program (details to be provided soon).<br />
In closing for this quarter, I encourage all of our members to complete our recently emailed<br />
survey to ensure your voice heard on our future direction and finally, with Jenny on leave<br />
until the middle of July and Kim supporting her heart child Liam we have a short term gap<br />
in our Westmead & Randwick support provisions, we thank you for your understanding.<br />
Please email us at mail@heartkidsnsw.org.au with your next visit date to ensure we have a<br />
care-bag waiting for you on arrival.<br />
Till next time …. warm regards,<br />
David Rose, on behalf of the team<br />
Chief Executive Officer<br />
to the following following<br />
supporters of Heartkids NSW<br />
Individual Supporters<br />
Alysia Boyce<br />
Barrie Murdoch<br />
Belinda Fletcher<br />
Belinda Maynell<br />
Catarina Da Ruos<br />
Cherry-Ann Abraham<br />
Claudio Droguett<br />
Daniel Cummins<br />
Dannie Condon<br />
Emma Austin<br />
Joanne Azzopardi<br />
Jordan Korda<br />
Julie Kingston-Bray<br />
Juni Shrestha<br />
Kerrie Shearer<br />
Lynn Fransisco<br />
Lucas Cairns<br />
Mardi Aplin<br />
Mark Buckle<br />
Melissa Parker<br />
Mel Peters<br />
Michelle Hinwood<br />
Mrs A Heyhorn<br />
Mrs D Pemberton<br />
Phuoc Trang<br />
Raelene McLenaghan<br />
Rebecca Fleming<br />
Rhonda Gibbons<br />
Robert & Patricia Thomas<br />
Robin Star<br />
Rose & Andrew Azzopardi<br />
Shae Buckley<br />
Simone McNamara<br />
Vanessa Erickson<br />
Veronica Brown<br />
Yasmin Ansell<br />
ACKNOWLEDGEMENTSTHANK YOU...<br />
Corporate/School Supporters<br />
Blue Mountains International Hotel<br />
School<br />
Chargrill Charlies Lane Cove<br />
Flower Power<br />
Forest Lodge Public School<br />
Golden Stave Foundation<br />
Harry’s Café de Wheels Liverpool<br />
Hunter Drilling<br />
Identikid<br />
Millhaven Financial Services<br />
Newcastle Vintage Motorcycle Club<br />
Peppercorn Services<br />
Planet Linen<br />
Ritchies<br />
South Coast National’s Show N Go<br />
St George Foundation<br />
Streeter Law<br />
The Travel Doctor<br />
Unique Ink<br />
Westpac<br />
Wyong Shire Council
4 Issue 2 2013 |<br />
Family Camp<br />
Images (Above): Kim & Dawn from HeartKids with Geoff Huegill and heartkids William and Leo<br />
(Right) Top-Bottom: Veronica Brown & Suzi, Geoff Huegill, , Soph’s Team After Colour, Heartkids Caitlin<br />
& Brittany, Team ‘Lionheart Hugh’<br />
This year’s Family Camp was held at<br />
Milson Island in the Hawkesbury River<br />
over the weekend of the 13th and<br />
14th of March. HeartKids NSW were<br />
delighted to host 24 families (over 100<br />
people), with everyone having a great<br />
time. The weekend started with a 30<br />
minute ferry ride to the Island, and<br />
straight to dinner and a briefing on<br />
what the next two days had in store.<br />
Once everyone had settled into their<br />
rooms the evening was free to catch up<br />
with old friends and make new ones.<br />
The next day everyone was broken<br />
up into groups and engaged in many<br />
different activities including canoeing,<br />
archery, giant swing, bush walk, bike<br />
riding and high ropes, the rest of the<br />
afternoon was free to relax by the pool<br />
or explore the island. After a lovely BBQ<br />
dinner and campfire it was off to bed<br />
to prepare for the next day’s activities.<br />
Another busy day followed by lunch<br />
and then time to head off to the ferry<br />
and home. Our annual Family Camp is<br />
free to members of HeartKids NSW and<br />
includes accommodation, all meals and<br />
activities. It is a wonderful opportunity<br />
to meet some other families who<br />
have a child or children with CHD. We<br />
have already booked next year’s camp<br />
at Myuna Bay for 28th - 30th March<br />
2014, if you would like to register your<br />
interest in attending please contact<br />
Dawn Everingham, we will let you<br />
know later in the year if we are able to<br />
accommodate you.
www.heartkidsnsw.org.au 5<br />
Mother’s Day Pamper Lunch<br />
Mothers were given a special treat at the<br />
Children’s Hospital Westmead recently at<br />
the Annual HeartKids NSW ‘Mother’s Day<br />
Pamper Day’ on Thursday May 2nd. The<br />
day was well attended by Mums from both<br />
inside and outside the hospital as well as a<br />
few Nannas.<br />
Students from The Australasian College of<br />
Education and Training in Broadway spent<br />
the day curling and straightening hair and<br />
doing make up and manicures. A couple of<br />
the students then even went up to Edgar<br />
Stephen Ward and painted a few faces and<br />
did a haircut or two.<br />
This year we introduced two massage<br />
therapists from Massage to Motivate.<br />
These ladies were kept very busy with their<br />
wonderful skills to help in relaxation and de<br />
stressing our special Heart mums.<br />
The Mums and Nannas were treated to a<br />
delicious lunch of gourmet sandwiches,<br />
made by Gemma, a friend of our own Lisa<br />
Chamberlin. Cakes were also on the menu<br />
thanks to the lovely ladies from Cake Angel.<br />
The cakes donated looked and tasted<br />
magnificent, almost too good to eat!<br />
There was also Lucky Door prizes drawn all<br />
day and I don’t think any Mum went home<br />
empty handed.<br />
We were also delighted to be able to give<br />
our mum’s in hospital over Mother’s Day<br />
some delicious chocolates, to help sweeten<br />
their day. We look forward to doing it all<br />
again next year.<br />
Canberra Hillclimb & Hospital Visit<br />
Our wonderful supporter Daniel Cummins<br />
once again hosted the annual Hillclimb for<br />
HeartKids in ACT raising nearly $9000 for<br />
our organisation. The Hillclimb was a great<br />
opportunity for our members in the ACT<br />
to connect with each other and meet our<br />
Family Support Coordinators Kim & Jenny.<br />
Our heartfelt thanks go to Daniel and his<br />
team. A big thank you to the Solari Family<br />
and Richard Lockett for participating in the<br />
media campaign beforehand.<br />
Harmony Day at Heathcote High<br />
This year at Heathcote High School, Harmony day was<br />
hosted by year 11 English Studies and the student<br />
representative council, with all funds raised on the day<br />
going to HeartKids NSW.<br />
The events timetable included: ‘Wear Orange Mufti-Day’<br />
for a gold coin donation; a cake/jelly stall; sausage sizzle;<br />
teacher vs. student soccer game (the teachers lost!), and<br />
teacher’s morning tea.<br />
It was an excellent day and everyone had lots of fun<br />
with over $450 raised for HeartKids! Said Susan Sullivan<br />
(Heartmum to Blake)<br />
HeartKids NSW would like to thank the 35th District Quota for their generous donation of over $14,000. Dawn Everingham<br />
was delighted to attend the opening ceremony of their annual conference in Liverpool recently where she was presented with<br />
the cheque.
6 Issue 2 2013 |
www.heartkidsnsw.org.au 7<br />
Be a HeartKids Hero<br />
Start training now for this year’s City 2 Surf which is coming up on Sunday 11th<br />
August 2013. HeartKids needs your help to raise $40,000 for our precious heart<br />
kids and their families.<br />
Register for the City 2 Surf and then join Team HeartKids to help us reach our goal<br />
in 2013. All runners who raise over $350 will receive a free running singlet.<br />
See our website for all the links to our City 2 Surf fundraising pages.<br />
www.heartkidsnsw.org.au<br />
HeartKids NSW are very excited to announce that we have a limited number of very special and<br />
exciting GOLD team opportunities to secure a GOLD charity position running at the front of the pack<br />
at this year’s City 2 Surf.<br />
Each of our runners will be competing to raise the most funds for HeartKids and we are pleased to<br />
announce that the HIGHEST fundraiser will win a limited edition Gregory Jewellers Tiny Tickers heart<br />
necklace valued at $200.<br />
Contact Dawn Everingham for more information on this year’s exciting opportunities for City 2 Surf.
8 Issue 2 2013| Member Update<br />
Member Update<br />
Who was in at The Children’s<br />
Hospital at Westmead?<br />
Ava Machell spent a few weeks in<br />
Commercial Travellers Ward, but is<br />
home now.<br />
Rachael Irvin and Mum Karen were<br />
in for a quick overnight visit to Edgar<br />
Stephen Ward (ESW).<br />
Mila Dunn was looking gorgeous and<br />
doing very well after her surgery back<br />
in February. She joined her Mum Nina<br />
at The Mother’s Day Pamper Day at the<br />
Children’s Hospital Westmead (CHW).<br />
Rijen Shrestha popped into ESW<br />
with his Mum Junee to say Hi after a<br />
check up. He is looking just great and<br />
enjoying being back at school. He and<br />
The Parker / Janzer family from Earlwood, with heart kid James,<br />
who has Aortic stenosis.<br />
The Ball family from Bonnyrigg, with heart kid Bella, who has HLHS.<br />
The Tan family from Sydney, with heart kid Jayden, who has<br />
Tetralogy of fallot.<br />
The Kingston-Bray family from Brookvale, with heart kid Ezekiel,<br />
who has an ASD.<br />
The Hong / Trang family from Little Bay, with heart kid Alexis, who<br />
has Tetralogy of fallot, VSD, overriding aorta & narrowed pulmonary<br />
artery.<br />
The Shearer family from Picnic Point, with heart kid Kayla, who<br />
has Cooarctation of the aorta, Pulmonary hypertension, PAPVR &<br />
Dressler’s syndrome.<br />
The Buckle family from Gulgong, with heart kid Henry, who has<br />
CHD.<br />
The Fletcher / Van Wely family from Balgowlah, with heart kid<br />
Annika, who has a large VSD & Tricuspid valve regurgitation.<br />
The Panaioli family from Bellbird, with heart kid Alby, who has a<br />
severe Dysplastic tricuspid valve.<br />
The Andrew / Kaunds family from Condell Park, with heart kid<br />
Manya, who has a VSD.<br />
The Graham / Nelligan family from Bathurst, with heart kid Harlow,<br />
who has Aortic stenosis.<br />
The Foster / Grigg family from Metford, with heart kid Jennifer,<br />
who has Tricuspid atresia, VSD & PDA.<br />
The Harrison family from Terrigal, who are parents to ACHD Natalie<br />
& grandparents to heart kid Addison.<br />
The Davidson family from Hornsby, with heart kid Oliver, who has<br />
Tetralogy of fallot, VSD & PDA.<br />
The Ward family from Latham, with heart kid Addyson, who has<br />
Multifocal atrio tachycardia.<br />
The Brown family from Colyton, with heart kid Lucas, who has an<br />
ASD.<br />
The Clarke family from Lilyfield, with heart kid Lucy, who has<br />
Cortria Triatum & PAPVR.<br />
his roommate whilst in ESW William<br />
Chamberlin have enjoyed some<br />
celebrity status by featuring in the Daily<br />
Telegraph and appearing on Channel 9’s<br />
The Morning Show.<br />
Michael Phillips spent several weeks<br />
in ESW after his heart transplant in<br />
January in Melbourne, but was recently<br />
discharged home to Newcastle, we<br />
wish you continued good health<br />
Michael.<br />
Malachy Frawley was in having surgery<br />
and was discharged home back to<br />
Nowra. Stay well Malachy.<br />
Alexander Murray was in having his<br />
Fontan and had an extended stay in<br />
ESW after a few hiccups, but is now<br />
home.<br />
New Member Welcome<br />
Little Georgie Maynell became unwell<br />
and had another visit to ESW. She<br />
has now been transferred to Bathurst<br />
hospital to be closer to her family and<br />
to get bigger and stronger for her next<br />
surgery.<br />
Liam Mackie became unwell on a<br />
recent holiday and had surgery at<br />
Westmead Hospital (Adults). We wish<br />
you a fast and full recovery Liam.<br />
Who was in at Sydney Children’s<br />
Hospital Randwick?<br />
Laycee Rowland-Davidson was in<br />
having her surgery recently and was<br />
looking bright as a button sitting in her<br />
cot when I paid her and her Mum and<br />
Dad a visit.<br />
The Evans family from Randwick, who are expecting a baby with<br />
TGA.<br />
The Enright family from Branxton, with heart kid Nicholas, who has<br />
DORV, VSD, Hypoplastic right ventricle & a Pacemaker.<br />
The McCarthy family from Darlington, with heart kid Scarlett, who<br />
has an ASD.<br />
The McNamara family from Boolaroo, with heart kid Kara, who has<br />
Coarctation of the aorta & VSD’S.<br />
The Austin / Wedesweiler family from Cooks Hill, who are<br />
expecting a baby with Coarctation of the aorta & Aortic stenosis.<br />
The Abraham / Bennison family from Lake Cathie, with heart kid<br />
Chad, who has an AVSD.<br />
The Kearns / Fleming family from Menangle, with heart kid<br />
Thomas, who has HLHS.<br />
The Tarplee / Murphy family from Wagga Wagga, with heart kid<br />
Harper, who has an ASD.<br />
The Menouhos family from Glendenning, with heart kid Kira, who<br />
has an AVSD, Mitral valve repair & Subaortic stenosis.<br />
The Maynell family from South Bathurst, with heart kid Georgie,<br />
who has Mitral valve stenosis, Mitral regurgitation & heart strings<br />
fused to heart wall muscle.<br />
The Coulon family from Wauchope, who are relatives of heart kid<br />
Aiden.<br />
The Walden family from Maraylya, with heart kid Tillie, who has<br />
TGA.<br />
The Wilson family from Byabarra, with heart kid Bailey, who has<br />
DORV, TGA, VSD, ASD & Coarctation of the aorta.<br />
The Stevancevic family from Bradbury, who are relatives of heart<br />
angel Matthew.<br />
The De Sa family from Lidcombe, with heart kid Daniella, who has<br />
Coarctation of the aorta, Bicuspid aortic valve & ASD.<br />
Barbara Buric who is a relative to heart kid Zara.<br />
Dannie Condon from Greenway, who is an ACHD.<br />
Kenneth Edwards from St Clair, who is an ACHD.<br />
Maria Sama who is a Heartkids volunteer.
www.heartkidsnsw.org.au 9<br />
Family Support News<br />
Hi Everyone, I am very excited to<br />
be writing my first Family Support News<br />
for HeartKids. I have been working for<br />
HeartKids for 6 months now and have<br />
found meeting and supporting families to<br />
be very satisfying and rewarding.<br />
Since our last Newsletter Kim and I<br />
have been very busy both in and out of<br />
hospital. Our Family camp was held from 15th-17th March (see<br />
full report on page 4).<br />
The following weekend Kim and I were off again, this<br />
time to Canberra. We attended The HeartKids Hillclimb. This<br />
event is organised annually by Daniel Cummins whose brother<br />
had CHD. The event was very well attended including 12 Heart<br />
Families and raised $9000 for HeartKids.<br />
During this visit to Canberra Kim and I visited Canberra<br />
Hospital and The Centenary Hospital for Women and Children.<br />
We had a lovely day visiting Paediatric Outpatients, Neo-natal<br />
Intensive Care and Special Care Nurseries, Ante-natal Clinic/<br />
Ward and Ronald McDonald House. We also paid a visit to the<br />
Machel family as Ava was in Canberra Hospital at the time.<br />
Back at The Children’s Hospital at Westmead<br />
preparations were well under way for our annual Mother’s Day<br />
Pamper Lunch (full report page 5). To top off the Mother’s Day<br />
celebrations mums at both CHW and SCH who were in hospital<br />
with their children were treated to a box of Chocolates from<br />
HeartKids NSW and kindly distributed by nursing staff.<br />
I have also been paying fortnightly visits to Sydney<br />
Update on Kim Mackie<br />
Our thoughts and prayers are with our<br />
wonderful Family Support Coordinator<br />
Kim and her family as their son Liam<br />
recovers from surgery over the next<br />
few weeks. Many of you would know<br />
that the Mackie’s recently embarked<br />
on the holiday of a lifetime, cruising to<br />
Hawaii and then enjoying a 2 week stay<br />
in Honolulu before returning home to<br />
Sydney. Unfortunately Liam became<br />
sick on day three of the cruise and was<br />
unwell for most of the time they were<br />
away ending with a 2 week stay in<br />
hospital when they arrived in Hawaii.<br />
Liam ended up with endocarditis and<br />
once stabilised enough to fly home was<br />
admitted to Westmead Hospital where<br />
he has undergone open-heart surgery.<br />
Kim has been overwhelmed with the<br />
support they have received from the<br />
HeartKids family, it is lovely to see the<br />
love and support she has provided for so<br />
many families over the years, returned.<br />
We wish Liam a speedy recovery and<br />
look forward to welcoming Kim back<br />
soon. Stay tuned for some tips on<br />
travelling overseas with a heart child<br />
from Kim in our next newsletter.<br />
Children’s Hospital and have been made<br />
to feel very welcome by the team. C2<br />
South is currently being painted and I<br />
look forward to seeing the “new” ward.<br />
As a lot of you may be aware<br />
Kim and her family have been on a<br />
very much anticipated month long<br />
family holiday. Unfortunately Liam their<br />
heart child became unwell and was<br />
hospitalised in Hawaii.<br />
As I write this report it is the eve of Liam’s 6th Open<br />
Heart Surgery. Everyone I know will keep Kim, Howard,<br />
Liam especially and Laura in their thoughts and prayers.<br />
By the time this Newsletter is distributed we are confident<br />
that Liam will be home and recuperating well. (Please see<br />
greater details below)<br />
Till next time, bye for now<br />
Jenny and Kim<br />
ATTENTION<br />
Please be advised for all families coming into The Children’s<br />
Hospital Westmead (CHW) or Sydney Children’s Hospital,<br />
Randwick (SCH) HeartKids FSC’s are no longer advised of your<br />
admission and we rely on you contacting us by email, Facebook,<br />
SMS or Phone: Kim 0406 424 627/ Jenny 0406 424 620<br />
You can tell your nurse you’d like to see someone from<br />
HeartKids and we’ll come by with a care bag and vouchers.<br />
This is as a result of changes to hospital policies regarding<br />
privacy and confidentiality.<br />
Amelia Herrmann started school<br />
this year after open-heart surgery in<br />
September 2011. Now a happy, healthy<br />
little girl, running everywhere and<br />
thriving at school.
10 Issue 2 2013| Zali’s Story<br />
Zali’s Story<br />
Zali Grace Maunsell was<br />
born on the 6th May 2010 at<br />
Figtree Private Hospital. During<br />
her 6 week paediatric check<br />
it was revealed that Zali had<br />
a heart murmur. We were<br />
obviously concerned but our<br />
son Jack (5) had a VSD and<br />
it closed at 2 years, so in my<br />
mind I just thought, here we go<br />
again.<br />
Two very long weeks<br />
later we met with Dr Murphy in<br />
Wollongong and he diagnosed<br />
a severe secundum atrial septal<br />
defect and a pulmonary vavlar<br />
stenosis. Life went along with<br />
regular check-ups with the goal<br />
being once Zali reached 10kgs<br />
they would operate – but she<br />
didn’t quite make that time<br />
milestone as she started to<br />
sleep 14 to 18 hours per day,<br />
refuse food and was taking<br />
longer to recover when playing<br />
with her friends.<br />
In November 2011 we<br />
were booked in to meet with<br />
Dr Cooper and Dr Winlaw to<br />
discuss options for Zali. After<br />
much consideration Zali was<br />
booked in on the 20th Feb 2012<br />
for her operation at Westmead<br />
Children’s Hospital.<br />
On the 19th February we<br />
kissed Jack good bye, left him<br />
in the capable care of family,<br />
as we headed to Westmead.<br />
On the 21st February 2012,<br />
the toughest thing I’ve ever<br />
done in my life was entering<br />
the operating room and the<br />
surgical team putting my<br />
angel to sleep in my arms in<br />
preparation for the surgery. I<br />
don’t wish this experience on<br />
anyone but at the same time<br />
given the situation I wouldn’t<br />
allow myself to have been<br />
anywhere else. I remember as<br />
tears ran down my face I asked<br />
the team to please look after<br />
her as I don’t think I could have<br />
survived without her….. Then I<br />
did the hardest thing, I turned<br />
and walked away….<br />
For five hours we walked<br />
the hospital grounds checking<br />
to make sure the pager had not<br />
gone off and I had missed it.<br />
Finally, we got the call to go to<br />
the PICU where I would be able<br />
to touch Zali again. I was soon<br />
confronted with a scene that<br />
is etched into my brain with<br />
my baby screaming pulling out<br />
tubes with three nurses trying<br />
to calm her down. I was told<br />
later that she decided to pull<br />
the tubes out herself. Within<br />
minutes it all had settled down<br />
and I was able to touch and<br />
reassure her that everything<br />
was going to be ok.<br />
Thanks to Jenny (PICU<br />
nurse) Zali was doing brilliantly<br />
and the next day we were<br />
transferred to Edgar Stephen<br />
Ward. On the 28th Dr Winlaw<br />
came in and said that we could<br />
go home the next day. We<br />
thanked him for everything<br />
that he had done for us, as he<br />
is a truly magnificent man. We<br />
were all so excited to say the<br />
least….<br />
In days to come it was<br />
discovered that Zali had picked<br />
up Viridous- a bacteria normally<br />
found in your mouth, but very<br />
dangerous anywhere else. She<br />
was finally put on Vancomycin.<br />
Three operations later and after<br />
69 days we final got to go home<br />
on Good Friday.<br />
Zali is now 2.5 years old<br />
and is a happy, talkative, and<br />
determined, some may say a<br />
very tenacious little girl, with<br />
lots of attitude. I wouldn’t<br />
say that we have completely<br />
relaxed , I don’t think I will ever<br />
stop worrying and I know I<br />
will never forget. The support<br />
from my family and friends and<br />
others such as Dr Winlaw, Dr<br />
Cooper, Dr Orr, Dr Ahmed, Dr<br />
Dora, Karen and the nurses at<br />
Westmead hospital and Kim<br />
from HeartKids we no longer<br />
feel so isolated.<br />
For the full story please<br />
see our website.
HKA News<br />
www.heartkidsnsw.org.au 11<br />
Gregory Jewellers has recently appointed HeartKids Australia and The Heart Centre for Children<br />
at Westmead Hospital as their chosen charity for their new ‘Gregory 925’ silver collection after<br />
Eden Florence Gregory, the newest edition to the third generation of the Gregory family was born<br />
with CHD. Gregory Jewellers is one of Australia’s leading premium jewellery brands. The launch<br />
event of the collection was held at their Sydney store earlier this year, during which time Gregory’s<br />
presented HeartKids with a cheque for their first donation from the sales of the range. The<br />
collection can be viewed on their website www.gregoryjewellers.com.au<br />
We have had the opportunity to work with Charter Hall who has contributed $50,000 in 2013 to<br />
fund a training and development program for HeartKids’ Family Support Coordinators. The role<br />
of a Family Support Coordinator is complex, and they frequently face challenging and emotionally<br />
draining situations. Under the program HeartKids will audit current skills, and deliver training and<br />
development to ensure the best possible service is provided to our Heartkids and their families.<br />
HeartKids Australia was chosen as a minor charity partner for the Chain Reaction Challenge New<br />
South Wales 2013. Chain Reaction is the ultimate corporate bike challenge that raises money for<br />
sick children by challenging senior executives who have a passion for cycling and an awareness of<br />
their corporate and social responsibilities, to ride a 1,000 plus kilometer course in 7 days.<br />
The rides started at the MCG at 8am on Saturday 27th April and finished on Friday 3rd May at the<br />
Entertainment Quarter next to the SCG in Sydney. For more information on the ride you can visit<br />
the HeartKids Australia website on www.heartkids.org.au<br />
The Cuppa for HeartKids campaign will be held in August and September. During these months<br />
we will be asking our supporters to host a Cuppa to raise funds and awareness for HeartKids. A<br />
variety of resources such as posters, certificates and invitations to personalize your event can<br />
be downloaded from the website. If you would like to host a Cuppa event or would like more<br />
information about the campaign all you have to do is visit the Cuppa website<br />
www.cuppaforheartkids.org.au<br />
Registrations are now open for our annual Education Day. This year’s seminar titled CHD: A<br />
Lifelong Journey will be held in Adelaide on Saturday the 24th of August at the Hotel Grand<br />
Chancellor. Each year HeartKids Australia brings together leading medical and nursing specialists<br />
and allied health practitioners to share the latest and most relevant information for families<br />
affected by Childhood Heart Disease during this one day seminar. So make sure you register for<br />
this event on our website www.heartkids.org.au<br />
With best wishes from everyone at HeartKids Australia,<br />
Kind regards,<br />
Jann Kingston<br />
HeartKids CEO Jann Kingston with Edward and<br />
Kelly Gregory
12 Issue 2 2013| Regional News<br />
REGIONAL ROUNDUP<br />
The Central West and Macquarie Areas<br />
joined forces this year for our Xmas<br />
party and we all spent the day together<br />
at the Newcastle Coffee Mornings<br />
(Last Wednesday of each month)<br />
Where: McDonalds Edgeworth, Main<br />
Road, Edgeworth<br />
Time: 10:30 am<br />
When: 26th June, 31st July, 28th August,<br />
25th September 2013<br />
Contact: Allison Burgess,<br />
ph: 0421 332 968,<br />
email: ally@mini-mods.com.au<br />
Or Rebecca Johnson, ph: 0411 441 857<br />
email: babyethan@live.com.au<br />
Central Coast Coffee Mornings<br />
(Held each month)<br />
Where: Holy Family Anglican Church<br />
Hall, 18 Parkhill Rd, Wyoming<br />
Time: 10 am - 12 am<br />
When: 28th June<br />
Contact: Veronica Brown,<br />
phone: 0409 071 171,<br />
email: veronicab2103@gmail.com<br />
All siblings are welcome and please bring<br />
a plate to share.<br />
Sutherland Coffee Mornings<br />
(Held each month)<br />
Where: TBC<br />
Time: 10 am<br />
When: 2nd July and 6th August<br />
Contact: Shantelle O’Leary,<br />
phone: 0412 917 880,<br />
email: dare2dance@optusnet.com.au<br />
Central West Events<br />
What: Rugby Day<br />
Where: TBC<br />
When: 2nd Nov<br />
Contact: Mardi Aplin,<br />
phone: 0416 112 885 or<br />
email: lifestudio@bigpond.com<br />
What: Trivia Night<br />
Where: Mudgee<br />
When: 26th October<br />
Contact: Mardi Aplin,<br />
phone: 0416 112 885 or<br />
email: lifestudio@bigpond.com<br />
Wagga Wagga<br />
The Tour De Ticker will be on again this<br />
year from the 20th – 24th November<br />
2013<br />
For information on how you can support<br />
this brave team of riders:<br />
Contact Katrina Brown, Wagga Regional<br />
Representative Phone: 0408 362 044,<br />
Email: patsy4heartkids@gmail.com<br />
Newcastle/Hunter Update<br />
The Newcastle and Hunter families<br />
joined together for a family BBQ at the<br />
Blackbutt Reserve on the 5th May. We<br />
had new members join us for the day<br />
and our HeartKids families had a great<br />
time catching up with our old members<br />
again. The wonderful Kiwanis provided<br />
us all with a delightful BBQ lunch and<br />
it was great to meet and share our<br />
CHD stories with their International<br />
Volunteers who helped cook the BBQ<br />
for the day. After lunch we met with<br />
the Blackbutt staff and volunteers who<br />
presented us with a Critter Encounter,<br />
where were able to touch and hold a<br />
range of critters including snakes, lizards<br />
and cockroaches. Thank you to our<br />
members for coming along to the day we<br />
had a great time.<br />
Allison Burgess and Rebecca<br />
Johnson, Newcastle/Hunter Regional<br />
Representatives.<br />
We’ve Got Heart<br />
Heart mum to Kara, Simone<br />
McNamara and her team<br />
participated in the Newcastle<br />
Color Run in May and had<br />
a great time fundraising for<br />
HeartKids.<br />
added another $420 to the total, bringing<br />
the total raised to over $4000. Well done<br />
to you all!!<br />
Not only did the We’ve got<br />
Heart team do a fantastic job<br />
in the Color Run but Simone’s<br />
daughter’s (Bria) preschool<br />
(Cameron Park Early Learning<br />
Centre) also held a Red Day and
Heart to heart<br />
with Champion Alanna<br />
www.heartkidsnsw.org.au 13<br />
We’re proud to introduce Alanna Evans, an expectant heart mum who’s also the<br />
very first person to sign onto the newly launched Heart Champions Regular Giving<br />
Program...<br />
How did you first come to learn about HeartKids NSW?<br />
I had heard about HeartKids but didn’t know what the charity was about until<br />
February this year. It was then, during our twenty week scan that we found out our<br />
son has TGA (Transposition of the Great Arteries), VSD (Ventricle Septal Defect) and<br />
possible CoA Coarctation of the Aorta). Besides being shocked we were desperate for<br />
more information and it was at that point our midwife suggested the HeartKids NSW<br />
website.<br />
Why do you feel so passionately about the cause?<br />
Immediately after finding out about our son’s condition I remember feeling a sense of<br />
isolation. However, after looking at the HeartKids NSW website I learned that we are<br />
not alone and many other families have been through similar situations. As the weeks<br />
and months went on I learned about some of the great things HeartKids NSW does<br />
regarding family support, research and improving awareness – all activities that can<br />
greatly improve the lives and experiences of so many Australian families.<br />
“For just a small<br />
amount per month<br />
you can not only<br />
contribute towards<br />
helping families during<br />
a difficult time, but also<br />
support research that<br />
can help us better<br />
understand CHD and its<br />
effective treatment.” –<br />
Alanna Evans<br />
You’ve opted to give a regular monthly donation. Why do you believe regular giving<br />
is important?<br />
Through monthly giving I believe my family can contribute to HeartKids NSW one day<br />
realising the vision of life unaffected by childhood heart disease.<br />
Become a Heart Champion Today<br />
If you too would like to become a Heart Champion or for more information, please<br />
contact Natalea: natalea.litchfield@heartkids.org.au, call 02 9294 0800 or visit our<br />
website www.heartkidsnsw.org.au<br />
As little as 25 cents a day...<br />
Alanna’s beautiful heart son in utero<br />
– she’s due to give birth this month<br />
can make a world of difference to a little heart in need.<br />
The Heart Champions Regular Giving Program is a simple yet effective way to provide lasting care and support to children with<br />
Childhood Heart Disease (CHD) and the families who cherish them. By setting up a monthly charitable donation to HeartKids<br />
NSW, you can support our vital work 365 days a year. Regular giving helps us plan ahead and ensures that we can continue<br />
to be there for the 1 in 100 children affected by CHD. HeartKids NSW receives no government funding. Our ability to care for<br />
families is entirely dependant on the generosity of caring individuals.<br />
Your regular gifts will help fund a range of vital programs to help heart families cope with the many challenges that CHD<br />
presents, including: peer support, financial support, family camps and ground-breaking medical research.
14 Issue 2 2013| Bereavement Page<br />
Bereavement Program<br />
HeartKids NSW has identified the need to support our families both emotionally and financially when dealing<br />
with the loss of a precious heart angel. We are pleased to announce that the second phase of our bereavement<br />
support program, to add to our events and website links, is now available for our members.<br />
Our Bereavement Support Program (BSP) now provides financial support for families seeking counselling<br />
through the ‘access to psychological services’ or the’ better health access to mental health’ programs as<br />
recommended by your GP. For more information on this policy or to apply for assistance please email Lisa<br />
Chamberlin lisa.chamberlin@heartkids.org.au<br />
Heart Angels<br />
We are thinking of all families whose loved ones anniversary has fallen recently or is coming<br />
up soon, including these Heart Angels…..<br />
Macie Aspey, Daniel Brown, Zeb Cooper, Alexander Curmi, Rosemary Gill, Ruby Glen, Ruby<br />
Hawkins, Amy Holloway, Fuhelave Jensen, Imogen Kate King, Isabela Lynch, Zachariah<br />
Moore, Angela Richards, Coralie Thurlow, Pangaea Tullipan, Layla Whitty, Keeley Woldhuis<br />
A recent grant from the St George Foundation will enable HeartKids NSW to ensure that<br />
heart families can access counseling support.<br />
To complement the specific support for our bereavement families, the St George Foundation’s generous<br />
grant will go a long way toward helping heart families cope well with the pressures that come with CHD. As<br />
every heart family knows, CHD diagnosis brings about a range of challenges. From dealing with the anxieties<br />
around their child’s health through to managing the day to day practical concerns of caring for a heart child<br />
whether in hospital or at home, as well as the financial pressures –<br />
there are just so many adjustments that heart families must come to<br />
terms with. This is where counselling support can be invaluable for<br />
heart families.<br />
We are also planning on extending this service to our families who<br />
are experiencing difficulties with their heart child’s journey and need<br />
help. Please stay tuned for more information on this via our website.
OUR TEAM<br />
HEARTKIDS NSW BOARD 2013<br />
Chairperson<br />
Jayne Blake<br />
Vice Chairman<br />
Georgia-Kate Schubert<br />
Secretary<br />
Joe Murphy<br />
Treasurer<br />
Jackie Giles<br />
Public Officer/HR Advisor<br />
Erron Palmer<br />
Directors<br />
Jamon Thomas<br />
Kevin Baker<br />
Stephen Snowden<br />
Karen Graham<br />
EMPLOYEES<br />
Chief Executive Officer<br />
David Rose<br />
Dave.rose@heartkids.org.au<br />
0408 501 931<br />
Operations Manager<br />
Dawn Everingham<br />
dawn.everingham@heartkids.org.au<br />
0420 364 125<br />
Event and Fundraising Manager<br />
Bianca Ciccia<br />
Bianca.ciccia@heartkids.org.au<br />
0404 113 049<br />
Administration & Special Projects Coordinator<br />
Lisa Chamberlin<br />
lisa.chamberlin@heartkids.org.au<br />
0406 424 511<br />
Donor Relations Manager<br />
Natalea Litchfield<br />
natalea.litchfield@heartkids.org.au<br />
0423 737 654<br />
Family Support Coordinator (Randwick &<br />
Westmead)<br />
Kim Mackie<br />
kim.mackie@heartkids.org.au<br />
0406 424 627 or 02 9294 0800<br />
Family Support Coordinator (Randwick &<br />
Westmead)<br />
Jenny Azzopardi<br />
jenny.azzopardi@heartkids.org.au<br />
0406 424 620<br />
REGIONAL REPRESENTATIVES<br />
Regional Coordinator<br />
Allison Burgess<br />
allison.burgess@heartkids.org.au<br />
0421 332 968<br />
North Sydney Representative<br />
Donna Hammond<br />
donnahammond2010@gmail.com<br />
0412 924 582 or 9969 4951<br />
Eastern Suburbs Sydney<br />
Vanessa Erickson<br />
mrsvanessae@gmail.com<br />
0407 064 262<br />
Sutherland Representative<br />
Shantelle O’Leary<br />
dare2dance@optusnet.com.au<br />
02 9576 1175<br />
South West Sydney Representative<br />
Kim Phillips<br />
kimandharry@bigpond.com.au<br />
0433 992 092<br />
Newcastle Representatives<br />
Kevin Baker<br />
kevin@mini-mods.com.au<br />
0408 588 565<br />
Allison Burgess<br />
Ally@mini-mods.com.au<br />
0421 332 968<br />
Hunter Representative<br />
Rebecca Johnson<br />
babyethan@live.com.au<br />
0411 441 857 or 02 4966 2783<br />
Mid-west Sydney<br />
Vacant<br />
Central West Representative<br />
Mardi Aplin<br />
lifestudio@bigpond.com<br />
0416 112 885<br />
ACT Representatives<br />
Sarah Henderson-Smith<br />
heartkidsact@gmail.com<br />
02 6242 7551<br />
Mid North Coast Representative<br />
Tracey Crutcher<br />
tr2430@virginbroadband.com.au<br />
0403 938 540<br />
Mid-South Representative<br />
Vacant<br />
Hills District Representative<br />
Daniela Gerlach<br />
drgerlach@optusnet.com.au<br />
0409 912 496<br />
Central Coast Representative<br />
Veronica Brown<br />
veronicab2103@gmail.com<br />
0409 071 171<br />
Wollongong Representative<br />
Sharon & Michael Rooke<br />
Sharon 0412 642 783<br />
Michael 0418 484 765<br />
smrooke@netspace.net.au<br />
Illawarra South Representative<br />
Vacant<br />
www.heartkidsnsw.org.au 15<br />
Coffs Harbour Representative<br />
David Stevens<br />
d.stevens@rubinstein-taybi.org.au<br />
0435 776 655<br />
Wagga Representative<br />
Katrina Brown<br />
patsy4heartkids@gmail.com<br />
0408 362 044 or 02 6926 6247<br />
New England New England Representatives<br />
Alison and Warren Sullivan<br />
bingun1981@bigpond.com<br />
0427 623 773<br />
CONTACT US<br />
HeartKids NSW<br />
PO Box 170<br />
Westmead Hospital,<br />
Westmead, NSW 2145<br />
www.heartkidsnsw.org.au<br />
02 9294 0800<br />
Yes! I’d like to become a supporter of<br />
Complete this form & post to:<br />
HeartKids NSW PO Box 170, Westmead Hospital<br />
Westmead NSW 2145<br />
HeartKids NSW is a registered charity and our services rely heavily<br />
on the wider community to be volunteers, sponsors and donors.<br />
Please send me more information about HeartKids NSW and in<br />
particular:<br />
Becoming a Volunteer<br />
Leaving a gift in my will<br />
Making a regular gift through my bank<br />
Participating in fundraising events<br />
Gifts can be sent to HeartKids NSW at the above address. Please<br />
complete the credit card authority and post.<br />
If you would like to contact us please call 02 9294 0800 or<br />
E-mail: mail@heartkidsnsw.org.au<br />
I would like to make a donation of $___________<br />
(Thank you, an official receipt will be sent)<br />
Cheque<br />
Visa<br />
Credit Card No:<br />
Money order - Payable to ‘HeartKids NSW’<br />
Mastercard<br />
Expiry Date: / CVC No:<br />
Cardholder Name:<br />
Signature:<br />
Mr/Mrs/Ms<br />
Street Address:<br />
Suburb/Town:<br />
State:<br />
Postcode:
CALENDAR OF EVENTS<br />
AUGUST SEPTEMBER OCTOBER<br />
City 2 Surf<br />
Sunday 11th August<br />
See Page 7 for details<br />
Tiny Tickers Ball<br />
Saturday 31st August<br />
See Page 6 for details<br />
Cuppa for HeartKids<br />
August & September<br />
See Page 7 for details<br />
Sydney Running Festival<br />
Sunday 22nd September<br />
www.sydneyrunningfestival.com.au<br />
TINY TICKERS BALL 2013<br />
Saturday 31st August<br />
Westin Hotel Sydney.<br />
See page 6 for details<br />
www.heartkidsnsw.org.au<br />
Spring Garden Tour<br />
Date: Friday 25th October<br />
Details:<br />
lisa.chamberlin@heartkids.org.au<br />
HeartKids would like to Thank our SPONSORS & SUPPORTERS for<br />
their generous contributions and support.