HEARTKIDS News ISSUE 2 2013

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