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heart matters 2015 ANNUAL mAgAziNe on a Good WICKeT From heart kid to playing cricket for Australia we speak to Beau Casson In THeIr WordS With their babies facing open-heart surgery we hear how two mothers got through their most trying days ...and more Ideas to help keep you occupied in hospital the people behind the scenes at HeartKids NSW fundraising ideas upcoming events and more TO MEND A BROKEN HEART You can help mend broken hearts by supporting our programs donation allo en to a child bag to be giv ily while in and their fam ing their hospital mak more stay that little comfortable. DONATE NOW donation helps our Fa mily Support Coordinators bring support and a shoulde r to lean on to 6 heart child ren and their families whils t they are staying in hospita l. 50s a care w 100 donation pro odation with accomm ild is in while their ch hospital. 0s 2vid0 a family e a donation allows r heart kid and thei the family to attend us Family Camp th em to allowing th s escape the worrie but of their illness if t only for a momen whilst sharing nces amazing experie es. with other famili 850 To donate www.heartkidsnsw.org.au contents 6 Welcome HeartKids NSW CEO David Rose 04 06 07 08 11 12 13 14 15 21 16 18 20 22 26 28 30 32 34 Heart of gold Paediatric cardiac surgeon David Winlaw Calendar What s on in the world of HeartKids NSW On a good wicket 15 11 From heart kid to playing cricket for his country. We speak to Beau Casson All heart Add a little heart to your life Lending a hand Introducing some of our Family Support team Familiar face Meet heart mum and HeartKids NSW operations manager Dawn Everingham 8 Grants in aid How your dollars help others In a mother s words Diary of baby Archie s open-heart surgery From diagnosis Harper now two years on Broken-hearted beauties Some of the heart kids behind our organisation Putting the heart in fundraising Heart Heroes and how you can be one too Cover the story of beautiful heart kid archie is told by his mum Katherine Potter on Page 15 Corporate support Can your business pitch in too Making a difference Inspirational supporters share their stories Things to do in hospital Publisher heartKids nsw www.heartkidsnsw.org.au Editor Belinda glindemann Belle Pr www.bellepr.com Design Vanessa russell raspberry Creative Design studio www.raspberrycreative.com.au Contributors David rose Dawn everingham Katherine Potter ashlee martin stephen seckold Boredom-busting ideas Food Eat your heart out with this recipe The year that was 2014 in review Regional round up A look back on 2014 across the regions Directory Add these useful numbers to your phone Please note this magazine is fully protected by copyright and all enquiries should be directed to heartKids nsw CeO David rose for written permission to reproduce any material in full or in part. the publisher believes all information to be true and correct at time of printing. editorial published in heart matters magazine is not to be construed as medical advice and readers are advised to consult their medical practitioners for advice. while every care has been taken in the preparation of heart matters magazine no liability can be accepted for errors or omissions. heart matters nsw magazine 2015 03 welcome Hello and welcome to tHe special world of HeartKids nsw This magazine our first annual publication celebrates HeartKids NSW s achievements from last year aims to raise awareness about our cause provides key information to new families with Childhood Heart Disease (CHD) whilst also being a tool to engage our many existing donors and future supporters. This year has seen the HeartKids NSW team deliver on a number key organisational priorities across support fundraising and research funding whilst also securing our first official office space and symbolically recognising our first Life Members and Hall of Fame members. We are proud of our work and are thankful to our wonderful supporters from our members donors and stakeholders to the gifted and inspiring clinicians who provide life saving interventions to our precious heart kids. Last year has continued our strong growth trajectory allowing us to invest heavily in family support and research funding. Specifically revenue increased by 8.3 per cent across all funding sources including a 74.8 per cent increase in grant income. With a healthy cash position up 21.2 per cent year on year I am confident that HeartKids NSW will continue to grow in the coming years and we will be in a position to improve the support offered to our members and all children affected by CHD. I look forward to spending 2015 with as many brave little heart kids as I can and striving to provide them and their families with the support they need through this vibrant organisation that I am very proud to be a part of. Warm regards David Rose CEO HeartKids NSW meet tHe team Head of Support Lara Bostock lara.bostock heartkids.org.au Operations manager Dawn Everingham dawn.everingham heartkids.org.au Events and Fundraising manager Bianca Ciccia bianca.ciccia heartkids.org.au Donor relations manager Natalea Litchfield natalea.litchfield heartkids.org.au Accountant Michelle Strawbridge michelle.strawbridge heartkids.org.au Admin Special Projects coordinator Lisa Chamberlin lisa.chamberlin heartkids.org.au Family Support coordinators (Randwick & Westmead) Kim Mackie kim.mackie heartkids.org.au Jenny Azzopardi jenny.azzopardi heartkids.org.au and Erin Kennedy erin.kennedy heartkids.org.au Regional coordinator Allison Baker allison.baker heartkids.org.au Regional officer ACT Sarah Henderson-Smith sarah.henderson-smith heartkids.org.au Regional officer Central West Mardi Aplin mardi.aplin heartkids.org.au HeartKids NSW Inc Postal address PO Box 170 Westmead Hospital Westmead NSW 2145 Phone 02 9631 2600 ABN 41 660 178 267 Please note All donations of 2 or more are tax deductible Please forward any Heart Matters magazine queries or feedback to mail heartkidsnsw.org.au To view the HeartKids NSW privacy statement refer to the Disclaimer and Privacy Policy link at www.heartkidsnsw.org.au Find us on Facebook at www.facebook.com heartkidsnsw think family Think PKF Australia Accounting Financial and Business Advisory As an organisation PKF is very proud to support HeartKids and personally I am fortunate enough to be able to assist as a non-executive Director. On behalf of our entire team congratulations to HeartKids for doing a great job to raise awareness and funds for this important cause. -Clayton Hickey Audit Partner at PKF pkf.com.au heart of gold I m a g i n e i f yo u r d a y j o b c a l l e d f o r yo u t o l i t e r a l l y h o l d a n i n f a n t c h i l d s h e a r t i n yo u r h a n d s N ow t h a t s a r o l e f o r s o m e o n e s p e c i a l W ORD S B elinDa GlinD emann Professor David Winlaw might be an award-winning paediatric cardiac surgeon cardiothoracic surgeon and transplant surgeon. He might head the Heart Centre for Children at the Children s Hospital Westmead as well as that centre s Kids Heart Research division. He might also be a Professor with the University of Sydney and have a raft of other impressive international qualifications to his name. But at the heart of who he is David Winlaw is a husband and a father of two kids aged 8 and 11. His qualifications tell you he is a highly regarded and distinguished medical practitioner but his life skills mean he can see a heart kid s medical situation from their family s perspective as well. And that s an important perspective to have. I wasn t a parent when I began in my medical career and I m glad for that David admits. When you re a parent it all starts to mean something different. You feel the good times (with heart kids families) but you really feel the hard times. As a student David says he was very attracted to the surgical approach . While he spent time in orthopedics and plastics it was when he was introduced to cardiology that he felt his calling. I was so interested in the physiology of the heart he recalls. It was in 1999 as a registrar at The Children s Hospital at Westmead that David was first introduced to paediatric cardiology. He says he had a wide-eyed attraction to the speciality as it offered him something that little bit more complicated and at the same time fulfilling to really sink his teeth into. Parallel to his early medical training David says he was lucky to have a long-term association with leading Australian ophthalmologist and philanthropist Fred Hollows. Fred reiterated to David the importance of surgery and that if he could do it well he should do it for as many people as possible. Following Fred s lead David has taken his surgical skills overseas to assist developing countries surgeons. He has spent time working in Thailand Cambodia and the Pacific and most recently he spent two stints in 2013 and 2014 working alongside paediatric cardiologists at Yangon Children s Hospital Myanmar. While the international surgeons he meets generally have a basic level of knowledge he is able to help them extend on their abilities and teach them the importance of the integrated team approach to patient welfare something that he says Australian hospitals do very well. David says his average working week comprises three related yet very distinct areas. He could be sitting at his desk working on research standing alongside the operating table working on a tiny heart or at his clinic working with heart kids parents on delivering the best outcomes for their children. I couldn t do any one of those three things on a full-time basis but my strength is in bringing those three elements together to complement each other he says. And of course the HeartKids organisation is supporting David s vital work all the way. HeartKids are busy motivated and expert in raising the profile of congenital heart disease in the community David says. We really appreciate their support in many of the research programs and in partnerships across Australia. 06 heart matters nsw magazine 2015 WHat S oN IN 2015 Hear tKids NSW had a whale of a time celebrating our members and getting our m e s s a g e o u t i n t o t h e p u b l i c l a s t y e a r a n d 2 0 1 5 i s s h a p i n g u p t o b e a n o t h e r c r a c ke r. H e r e s s o m e o f w h a t we a r e u p t o. feb feb sweetheart MoNth Various events will be held throughout February for SweetHeart Month. Don t miss your Sweetheart Day merchandise on sale on Feb 13 (SweetHeart Day) at Town Hall Wynyard and Circular Quay feb 22 NortherN Beaches car & Bike Fest Will be held today at Pittwater Rugby Park Warriewood mar mar 22 hillcliMB For heartkids Hillclimb for HeartKids runs from 9am-4pm at Fairbairn Park HillclimbTrack Sutton Rd ACT Watch exciting . time trial car racing action or have a ride in a real race car Children s activities food and drink available. Free entry for spectators mar 27 FaMily caMp Family Camp kicks off today and runs until March 29 at Myuna Bay. Annual Family Camp is free to members of HeartKids and their immediate family members through a registration process. maY JUN maY 8 Mother s day paMper luNch Celebrating those special women in our families. Grandmas welcome too The event will be held at The Children s Hospital at Westmead (ground floor function room) maY 30 tiNy hearts Ball oraNge Tiny Hearts Ball Orange is on today at The Orange Ex-servicemans Club JUN 16 Major FuNdraiser raFFle Get your tickets in HeartKids NSW s major fundraiser raffle before it closes today. You could win a 5000 holiday to Fiji a Samsung home entertainment package or some stunning jewellery from Gregory Jewellers. aUG aUG 9 city2surF Sign up and raise money for HeartKids NSW through this very popular annual event that travels a 14km course from the CBD through to Bondi Beach. aUG aNNual tiNy tickers Ball Our big annual event the TinyTickers Ball is always a good reason to get frocked up and celebrate HeartKids. Last year s event raised just under 110 000 can we top that this year Email events.nsw heartkids.org. au for more information. dec christMas parties Christmas is in full swing this month at HeartKids. Make sure you keep an eye on our website for the various parties being held in the city and across the regions eg. Central West s Christmas Party will be held on Dec 7 in Orange. weeklY eveNts wedNesda An exclusive playgroup just for HeartKids is on everyThursday (10am-noon) at ys The Domain Community Centre 1 Oakes St Westmead. Meet other parents in a safe and understanding environment. Register via erin.kennedy heartkids.org.au thursda Castle Hill Indoor Sports Centre hosts HeartKids playgroup every Wednesday ys (10am-noon) at 18 Anella Ave Castle Hill. Register via erin.kennedy heartkids.org.au Scan this QR code to find out more about HeartKids NSW s upcoming events heart matters nsw magazine 2015 07 08 heartbeat magazine 2013 On a gOOd wiCket Parents of hear t kids will be forgiven for thinking their child may never play spor t at an elite level. Little broken hear ts and physical activity don t seem to go hand in hand. Beau Casson however is one hear t kid all grown up who proved that theor y wrong WORDS BelinDa glinDemann June 12 2008. It s a date that Beau Casson has cemented in his memory. All those games of backyard cricket with his siblings all those casual innings enjoyed in the park across the road from his childhood home in Perth all those years of cricket training were leading up to this one day. The day he donned the baggy green and played cricket for Australia. But long before Beau Casson was an Australian Test cricketer he was a heart kid. Beau was born the youngest of seven children and grew up in Subiaco Western Australia. While his mother Denise enjoyed a trouble-free pregnancy with Beau and none of her other three sons and three daughters had any previous major health problems it was when Beau was three months old that his father Arthur noticed Beau s lips were slightly blue after a feed one day. A doctor in general practice Arthur s instinct told him something was wrong. And unfortunately he was correct. Beau s diagnosis was Tetralogy of Falott (TOFs) one of the most common cyanotic heart defects. Beau was immediately admitted for closed-heart surgery. I remember the day well Arthur says. I was working and it was fairly busy. I was just about to jump in an ambulance with a particularly unwell patient when my secretary took the call. It was an incredibly emotive time for me. (As a doctor) I knew enough to know we had a battle on our hands. Beau s condition stabilised but by the age of three he was required to undergo his first open-heart surgery in Melbourne. While his memory of the actual surgery is not clear what Beau does remember of that particular period in his life was the many visits he and his family would make to his cardiologist s office oh and playing sport. Sport was really big in my family Beau recalls. In the summer we d all play cricket and in the winter it was AFL. I guess for my parents it was a way to get us seven kids out of the house say he wanted to play cricket for a living . Arthur vividly remembers the first time young Beau mentioned this plan to him and recalls the story with a heartfelt tear in his eye. Beau would have been five Arthur says. He was pulling on my shorts this one day and said to me Dad I want you to help me with something . He told me I want to play cricket for Australia . I said to him Son I will do my very best to help you with that . From very early in the piece Beau had incredible hand-eye coordination. My parents were incredibly supportive says Beau. At the time we lived across the road from a park and with six brothers and sisters there was never a shortage of someone to go across the road to play with. Beau s second open-heart surgery occurred again back in Melbourne when he was 10. It really dawned on me for the first time the night before that operation how serious it all was. I was finally old enough to gauge the significance of it all and the stress it was having on my family. Beau says it must have been a logistics nightmare for Denise to be away from their large family and interstate with her youngest son for his procedure. So it was an even bigger surprise for Beau to also find Arthur in the intensive care ward when Beau awoke from his surgery. Arthur had surprised them by flying interstate to be with his youngest son in his time of need. It was a midnight flight and I caught a taxi from the airport to the hospital in the early hours. I can recall walking into intensive care and seeing Beau s favourite teddy bear sitting on a bed but there was no body in that bed. I can t tell you how I felt for a second I thought he was gone... As Beau recovered from that surgery he says his passion By the early years of primary school when Beau was asked what he wanted to do when he grew up he d always for cricket became stronger and stronger and fatefully his Continued on page 10 heart matters nsw magazine 2015 09 Continued from page 09 giving me gentle reminders about what I could and couldn t do. In 2011 however Beau was forced to retire from the game he so desperately loved citing TOFs as the reason. But it wasn t before he d achieved so many of the goals he d set for himself. Beau says he s very positive about his future splitting his time between coaching young NSW cricketers as a casual secondary school PE teacher husband to Sally and as a HeartKids NSW ambassador. That role in particular is one he s very enthusiastic about. I get to attend HeartKids awareness days and even rattle the tin on the street to collect donations. It s so wonderful to meet the actual heart kids and their families and watch as this organisation continues to grow bigger and bigger he says. Arthur sums up Beau s life story best. All throughout this life Beau has shown courage relentless persistence humility and an incredibly unassuming character. He s one of the most humble people I know Arthur says. Our kids are all very talented yes but they are valued for who they are not defined by what they do. Beau is an ordinary person with an extraordinary story. He s on an extraordinary journey. strength as a spin bowler emerged. It was a position in the game that required skill and technical nous rather than too much physical exertion. It was also the position that one of his idols Shane Warne played. Among his achievements in the game Beau represented Western Australia at all junior levels and went on to represent Australia in the U19s team. He was a vital part of that team s win of the 2002 U19 Cricket World Cup in New Zealand taking 12 wickets in six matches. It was in the 2002-03 season that he won his first full state contract. He made his first-class debut against Tasmania at the WACA and although reports state he had a quiet debut with the ball he had a solid showing with the bat scoring 35 runs. By 2006 Beau decide to make his move from west to east to play for New South Wales and it was within just two years that he d earn that beloved baggy green the 401st awarded in this country. He d proved that even with a congenital heart condition he could still make it to the elite level of sport here in Australia. There were some elements of training that I couldn t do but I personally wanted to work hard and not be seen as a slacker. The cricketing hierarchy had an excellent relationship with my cardiologist and they were always Above Beau and his siblings loved all types of sport and backyard cricket was among their favourites. Lucky for young Beau TOFs didn t stop him from achieving his sporting dream. w e b S t a y u p t o d a t e w i t h H e a r t K i d s N S W v i a t h e i r Fa c e b o o k p a g e a n d w e b s i t e . F o r m o r e i n fo r m a t i o n v i s i t w w w. fa c e b o o k . c o m h e a r t k i d s n s w a n d w w w. h e a r t k i d s n s w. o r g . a u 10 heart matters nsw magazine 2015 All HeArt A l l H e a r t K i d s fa m i l i e s a r e b o n d e d by o n e t h i n g t h e h e a r t . W hy n o t s u r ro u n d yo u r s e l f w i t h p r o d u c t s l i ke t h e s e t h a t r e m i n d yo u h o w s p e c i a l yo u r H e a r t K i d i s 1. 3. 2. 8. 9. 8. 4. 7. 6. 5. stockists 1. Hartley bear 20 2. Cotton t-shirts in kids sizes 0-14 15 or adult sizes S-3XL 20 3. Singlets sizes XS-2XL 25 4. Pens 5 each 5. Lollipops 5 each or three for 10 6. Woven wrist bands 2 each or three for 5 7. Cap 10 8. Jellybeans 4 each or three for 10 9. Beaded bracelet 10. All products available from HeartKids NSW. Email your order to mail heartkidsnsw.org.au or phone 02 9631 2600 heart matters NsW magaziNe 2015 11 LENDING A HAND Hav e yo u m e t a He ar tKid s N s W Fami ly su ppo r t te a m me mber ye t tH e y are K NoWle d g e a b le aNd s uppo r tiv e a N d tH ey Will pr o ba b ly b e so me oF tH e b e s t F ri eNd s you ll m a Ke Kim Mackie Family Support Coordinator Randwick and Westmead (above left) I have worked for HeartKids for eight years as a Family Support Coordinator in both of the Sydney children s hospitals. I ve met hundreds of families over this time and have had the privilege of becoming family friends with many. My heart kid son Liam now 24 has had six heart surgeries at all stages of his life and so this enables me to share my family s journey and in turn hopefully help other families. I also visit regional hospitals throughout the year spreading awareness and support. I ve been married for 34 years and also have a daughter Laura 20. Erin Kennedy Family Support Coordinator Randwick and Westmead (above middle) I had been volunteering for a couple of years with HeartKids leading up to the beginning of 2014 when I began working for the organisation. I love my role as a Family Support Coordinator supporting families both in hospital and out often from the beginning of their heart journey pregnancy during major heart surgery and beyond. I am also the HeartKids playgroup coordinator a role I love. I m proud mum to Charlie 10 and my heart kid Hannah 8. Hannah also has quiet complex liver and kidney problems. Jenny Azzopardi Family Support Coordinator Randwick and Westmead (above right) I began working for HeartKids as a Family Support Coordinator in 2012 however I had been volunteering at HeartKids for many years prior to that ever since becoming a heart mum myself some 11 years ago. In my role I support families both in and out of hospital as they travel the journey of their children having major heart surgery. As well as my job with HeartKids I am also a midwife at Westmead Hospital. I am the proud mum of five children aged between 11 and 24 years. Along with these three hospital-based Family Support Coordinators (FSCs) HeartKids NSW has Regional FSCs based in Canberra Newcastle and Orange as well as 15 other regional officers and representatives. They provide a comprehensive outreach support program for regional families via local face-to-face contact activities and support initiatives everything from simply providing a shoulder to lean on to social events and financial assistance Regional Roadshows attending cardiology outpatients clinics in the regions and also facilitating peerto-peer support opportunities in a social setting. As we receive no government funding we rely on the support of the community and are always appreciative of sponsorship prizes etc. If you can help us support our regional members please contact HeartKids NSW at mail heartkidsnsw.org.au DiD you know The in-hospital Family Support program runs Mon-Fri at The Children s Hospital Westmead and on Tuesdays at The Sydney Children s Hospital Randwick. For more phone 9294 0800 or email mail heartkidsnsw.org.au 12 heart matters nsw magazine 2015 Familiar Face If the re s o ne p e r s o n wh o puts th e h e a r t In he ar tKId s n s w It s dawn ev e rIng h a m . a s mum to h ear t KId h o lly now 13 dawn h a s b e e n th r o ug h wh at e v e r y hear t K Id s par e n t h a s . f or th e pas t 1 3 ye a r s howev e r s h e h a s b e e n p u ttI ng th at Know le d g e and spI rIt bacK In to the o rganIs atIo n th at helpe d h er th r o ug h h e r darKe s t days WORDS BElIN DA GlINDEMANN Dawn Everingham remembers the day she and Stephen went in for their 20-week ultrasound. As a first-time mum she was glowing with joy and excitement. But it was with a worried expression and a few short words from the sonographer that Dawn s world would seemingly crash down. When baby Holly first came into the world she spent just a few short minutes having cuddles with her mum before doctors were forced to whisk the baby away. Holly was born with TGA. As Dawn recovered from the birth that day Holly s father Stephen who accompanied Holly across to the children s hospital was enduring his own pain as his baby daughter crashed was revived and thankfully stabilised. Within a week Holly was having open-heart surgery. The hardest part in all of it was the day before Holly s surgery as we were talking to the doctors and the reality of it all really sank in Dawn recalls through tears. I just wanted to pick her up and run. Dawn and her family including her father who had travelled from the United Kingdom for the operation sat for six hours in a waiting room in silence as Holly s broken heart was mended. I remember the surgeon eventually came out whistling she smiles. We were relieved to find out everything went really really well. Within eight days the family was heading home and now 13 years on Holly has grown into a fit and active teenager who loves to swim and dance. She enjoys ballet tap jazz and hip hop dance styles but also knows her boundaries when it comes to physical exertion. She hasn t had any major problems in her 13 years since open-heart surgery but continues to have annual check-ups with her cardiologist who is monitoring two trivial leaks. So grateful was Dawn for Holly s recovery she vowed to stay connected to HeartKids NSW and volunteered within the organisation for the next six years. When the Operations Manager s role came up in 2007 Dawn decided it was time to give up her career as a travel agent and focus on helping others in the same boat as she had been. Dawn says one of the joys of her job is making friends with and staying connected to so many other heart kids and their families. At the time of Holly s birth I was so afraid of the unknown. I couldn t see how I was going to get to the other side Dawn says. Now I m on the other side and know I can help other parents get there as well. DiD you know Workplace giving is a simple tax efficient way to donate to Hear tKids NSW. Donations are made from pre-tax pay so the tax deduction is immediate and guaranteed. Phone 9631 2600 for details heart matters nsw magazine 2015 13 GRANTS IN AID H e a r t K i d s N S W i s l u c ky t o h a ve a s o l i d fi n a n c i a l s u p p o r t e r b a s e b u t t h e m o r e d o l l a r s r a i s e d t h e m o r e va l u a b l e r e s e a r c h t h a t c a n b e c o m p l e t e d a n d t h e b r i g h t e r t h e f u t u r e w i l l b e f o r h e a r t k i d s . H ow c o u l d a n yo n e d e n y t h e m t h a t o p p o r t u n i t y WORD S b elinDa GlinD eMann A big part of what the HeartKids organisation is about is providing support to children with childhood heart disease (CHD) and their families. However the other key focus is funding vital ongoing research into CHD for future heart kids. As they say knowledge is power. The Heart Centre for Children based at The Children s Hospital at Westmead is one local organisation benefiting from the HeartKids Grants in Aid program where dollars raised by supporters of HeartKids across the country are funneled into important studies and research. Decisions on how Grants in Aid are spent are not made lightly. A dedicated and professional Research Advisory Committee carefully assesses each application to make its recommendation. Heart Centre for Children s Head of Psychological Care Dr Nadine Kasparian (pictured right) says HeartKids are wholeheartedly supportive and incredible advocates of the Centre s unique program. This is the only integrated clinical psychology service research program of its kind in the Asia Pacific area Nadine says. In 2011 Nadine says HeartKids donated 300 000 toward the 500 000 Cherish Study a world-first major study exploring the emotional changes that occur for babies with CHD and their parents. Parents of babies born with CHD are faced with all the normal challenges associated with caring for a new baby as well as the added emotional stress of coping as best they can with their baby s diagnosis she says. The pressure of this diagnosis can have profound effects on everyone in the family. The Cherish Study explores the biological and psychosocial changes that occur for parents of babies with CHD before and after their baby s birth as well as how these changes can influence the developing relationship between parents and their baby. Understanding the impact of paediatric illness on children and families will mean that vital support services can be developed and tailored to meet the needs of families from the time of diagnosis onwards Nadine explains. Just last year HeartKids was also able to provide 20 000 for the production of a suite of informative and supportive reading materials that will be available to CHD families by the end of this year. Through donations like those from HeartKids we are also able to build capacity in our field by supporting students and young researchers with a view to building a workforce for the future Nadine says. Other national research projects currently funded by HeartKids Grants in Aid program include Project Improving exercise capacity in children with a Fontan circulation after the extracardiac conduit. Principal investigator Dr Julian Ayer. Institution The Heart Centre for Children The Children s Hospital at Westmead and the University of Sydney. Project Investigating the need for neurodevelopmental follow-up for infants undergoing open-heart surgery. Principal Investigator Miranda Campbell. Institution Queensland Paediatric Cardiac Service Mater Children s Hospital. Project Genetic testing in children at risk of heart disease. Principal investigator Professor Chris Semsarian. Institution Centenary Institute. Project Exposures during human embryo development and the risk of congenital heart defects. Principal Investigator Professor Michael Davies. Institution The Robinson Institute The University of Adelaide. Project Family coping with childhood heart disease. Principal Investigator Professor Alun Jackson. Institution Heart Research Centre The Robinson Institute Royal Melbourne Hospital. Project Infant and family wellbeing after cardiac surgery The role of psychosocial support. Principal Investigator A Prof Brigid Jordan. Institution Murdoch Children s Research Institute Melbourne. web For more infor mattion about how you can make a financial contribution to Hear tKids NSW or lear n more about the Grants in Aid program click the How you can help and Research tabs on our website 14 heart matters nsw magazine 2015 In A mOtHer s wOrds I t s h a r d fo r a n o u t s i d e r t o i m a g i n e t h e p a i n a p a r e n t g o e s t h r o u g h a s t h e i r yo u n g h e a r t k i d fa c e s o p e n - h e a r t s u r g e r y. O u r g o r g e o u s c ov e r m o d e l A r c h i e p r ov e s h ow q u i c k l y t h ey b o u n c e b a c k . H e r e i s A r c h i e s s t o r y i n h i s m o t h e r s ow n wo r d s WORD S KatheRine POtteR Diagnosis Overjoyed to be told we were having a boy at our 20-week scan our world was turned upside when at the end of the scan we were also told that our baby had Transposition of the Great Arteries and would require open-heart surgery within his first few days of life. archie s journey begins Our little man was progressing well until placenta complications affected his growth and an urgent C-Section was required at 37 weeks. Within a few hours I was in an ambulance being taken to Westmead from Newcastle. Our little man arrived weighing 2.24kg and was taken straight to NICU. He needed to have a Balloon Atrial Septostomy which stabilised him until his arterial switch surgery. I waited 12 long hours to meet my little man (pictured above left). With much hesitation from the surgeon due to Archie s low birth weight he finally had his switch repair at seven days old. Time seemed to stand still that day. After what seemed like an eternity we got the news we were waiting for the surgery was successful. Relieved but anxious nothing could have prepared us to for the sight of our precious seven-day-old baby after the surgery especially when his chest had been left open to allow for the swelling. It truly took my breath away. Archie was transferred from Westmead to the John Hunter Hospital on his due date (21 days old) where he stayed for another week. By the time we took him home at 4 weeks he weighed just 2.4kg. Once we did get him home and he finally reached 3kg at 8 weeks old he went from strength to strength and slowly but surely he was reaching his milestones. challenges still lie aheaD Complications from Archie s arterial switch repair have left him with Pulmonary Stenosis and Coarctation of the Aorta both of which are being monitored with annual reviews. Archie is now 3 years old and growing very well (pictured above right). He has a few other health issues but nothing is slowing him down how heartKiDs has helpeD To me HeartKids means hope hope for a future with less and less CHD. HeartKids also provides a safety net for parents and it also allows us to find other parents and heart kids to share and connect with something which is incredibly important for the health of everyone in the family. I am in total awe of our beautiful and precious heart kids. Their determination and bravery at times when you think they just can t take any more is inspirational. We have been incredibly lucky with our heart kid Archie and would like to thank everyone who helped us and our darling Archie along our heart kid rollercoaster journey so far. heart matters nsw magazine 2015 15 BROKEN-HEARTED BEAUTIES H e r e a r e s o m e o f t h e m a n y v i b r a n t fa c e s t h a t m a ke t h i s o r g a n i s a t i o n w h a t i t i s . H e a r t K i d s N S W w i s h e s yo u a n d eve r y o n e o f o u r h e a r t k i d s g o o d h e a l t h and happiness in 2015 C h he aorta ft ion o rctat Coa n 11 valve owde rtic t t e S nVSD faulty ao arlo Trun Liam cus arte Mac riosis kie 2 VSD 4 artifi cial pulm ona ry va lve Tr a n sp 13 eringham s Holly Ev th e g re a t a rt e ri e o si ti o n of Te tra lo gy of Fa llo t Chloe Field 8 icle ht ventr lastic rig ardia t hypop a and dextroc outle esi Double nary atr pulmo and VSD Riley Br own 11 Tra ns po sit io D om in ic A zz op ar di n of th e gr ea t ar te rie s 11 mond 8 Le o H a m o f a o rt a C on o a rc ta ti left cle liam Wil l e ve n t r i Sing mb Cha 8 erlin a r t he web To stay up to date with Hear tKids NSW make sure you subscribe to our monthly email newsletter. You can also read our past newsletters at www.hear tkidsnsw.org.au whats-on newsletters 16 heart matters nsw magazine 2015 Hypo Amel ia p la s t aring ic le 9 ft he ar t s y n d ro me SD rta ASD V n of the ao Coarctatio en os is e st mitral va lv Manw K ry st el le B o u lo s 13 Kai G o ddard 6 Te tr a lo g y o f Fa llo t Ha dy 8 enne h K r r hy t h m ia nna card ia c a VSD DOR Sarah V p u lm Gerla onar y atr e s ia ch 6 Pulm Luca onar Thom y ste nosis as 4 and hypo plast ic rig ht ve n VS Ta t e d a oh a s o f t p rr u FS wi Inte VC nd Aa 4 ey h P DA a l a t e arv r H r t i c a rc c l e f t p t ylo tricle Jack Memphis H y p o p la n d ro m h e a rt sy st ic le ft son 6 Barlett 1 TGA DORV ASD VSD hypopla stic aortic e Owen Te t r a g alo ulmon p 5 ker V S D n Ba a r g e chlaf Fa l l o ta tl r e s i a La y o r y a rc h DiD you know It s estimated that 32 000 children (under 18 years of age) are currently living with CHD in Australia. Also there is no known cure or prevention. Once a heart kid always a heart kid heart matters nsw magazine 2015 17 HeArt HeroeS C o m mu n i t y s p i r i t i s w h a t d r i ve s H e a r t K i d s N S W s c o m m u n i t y f u n d r a i s i n g p r o g r a m H e a r t H e ro a n d t h e r e a r e s o m a n y h e ro e s a m o n g o u r s u p p o r t e r s . H e r e a r e s o m e o f t h e i r s t o r i e s . . . Heart Heroes come in all shapes and sizes all personality types and from all walks of life. But there s one thing that ties them all together a mission to raise funds for HeartKids NSW to enable us to continue our charity work in support of those eight babies born each day with CHD. Through 2014 s events one thing became obvious about our Heart Heroes they like to run The 2014 Sun Herald City 2 Surf was a huge success for HeartKids NSW with our amazing runners having a great time at the event. Collectively they managed to raise more than 30 000 such a phenomenal effort and one that we are very grateful for. A special thank you must go to Team Mia who raised more than 11 000 in memory of Heart Angel Mia. With all the rain in August the 2014 Pub 2 Pub event ended up being 1.5km longer than expected for competitors but at least the sun was shining on the day. A big thank you to the amazing people who ran in this event on behalf of HeartKids NSW and raised more than 6000. Still on the topic of fun runs Sydney Centennial Parklands truly was the happiest place on the planet on August 24 for The Swisse Color Run. Entrants were able to experience the full effect of the coloured powder that is thrown on them during the 5km course. We would like to thank everyone who participated on behalf of HeartKids especially Team Vermunt who entered for Baby Ellis. Con Dedes a heart kid himself completed a mammoth walk from Wollongong to Woolwich in 2014 in aid of HeartKids NSW and Heart Research Australia. Finishing at his state-of-the-art restaurant Deckhouse in Woolwich Con s 100km feat took 24 hours to complete and raised an amazing 82 000 that will be divided equally between the two charities which are closest to Con s heart. Con s Above Ride for HeartKids is an annual Heart Hero event. phenomenal support of our organisation is invaluable and always greatly appreciated. (Editor s note You can read more about Con on pages 23-24.) Ride for HeartKids is another Heart Hero annual event this time a charity bike ride. Individuals around Australia develop their own bike-related challenges and fundraising goals and then seek to raise that money by completing their challenge. In 2014 we had individuals competing in triathlons aiming for yearly targets both individually or as part of a team as well as riding in a long single-day event. Ride for HeartKids is honoured to have Her Excellency Lady Cosgrove (wife of His Excellency General the Honourable Sir Peter Cosgrove AK MC (Retd) Governor-General of the Commonwealth of Australia) as our patron and number one supporter. Continued on page 19 W E B J o i n t h e G r a c i o u s H e a r t s c l u b b y a d d i n g H e a r t K i d s N S W a s a b e n e fi c i a r y o n yo u r w i l l . F o r m o r e i n f o a b o u t m a k i n g a b e q u e s t d ow n l o a d A G u i d e t o M a k i n g & U p d a t i n g Yo u r W i l l f r o m o u r we b s i t e 18 heart matters NsW magaziNe 2015 Here To HelP Fe e l i n g ov e r w h e l m e d N e e d s o m e o n e t o t a l k t o F u n d e d by H e a r t H e r o e s t h e C a r i n g H e a r t S u p p o r t P r o g r a m i s a n o t h e r wa y w e a r e h e r e fo r yo u Above Team Mia in the City 2 Surf. Below Team Eli. As you know HeartKids NSW has amazing Family Support Coordinators and staff to talk to. But if you need professional support HeartKids NSW is also able to offer financial assistance under our Caring Heart Support Program. Money raised by our dedicated Heart Heroes aids this program. HeartKids NSW understands that stress is common in daily life but exposure to prolonged stress can start to affect people s mental and physical health. There are simple steps that can help reduce or manage stress such as maintaining a healthy lifestyle healthy eating regular exercise and getting enough sleep but sometimes additional help is required especially when faced with a diagnosis of CHD. Continued from page 18 For more about Ride for HeartKids online fundraising team visit www.everydayhero.com.au event rideforheartkids February 23 saw a spectacular turn out of cars and supporters for the annual HeartKids Hillclimb at Fairbairn Park Hillclimb track Canberra. With 41 competitors on the grid (including one heart mum ) it was a day filled with racing action. Beautiful weather yummy food and awesome laps in the racing cars for the kids left everyone with big smiles on their faces. Daniel Cummins has been organising the HeartKids Hillclimb since 2009 the year his heart angel brother William would have turned 21. In this time Daniel has raised more than 41 000 for HeartKids NSW ACT which is amazing and such a special tribute to racecar-loving William. (Editor s note You can read more about Daniel on page 22.) Another keen Heart Hero is Barney Bedelis and his annual Northern Beaches Car and Bike Show. Barney has raised more than 27 000 in the years he s been associated with HeartKids NSW. It s a very busy event for Barney with 1200 people through the gates at last year s show alone. (Editor s note You can read more about Barney on pages 23-24.) For those interested in organising a Heart Hero fundraiser check out the How you can help tab of HeartKids NSW s website and search Fundraiser . Our Caring Heart Support Program provides financial assistance for you to access professional support such as the Access to Psychological Services program or Better Access to Mental Health program as recommended by your GP It s more . common than you think to take this extra step for support and when you do it s often surprising how beneficial it is. HeartKids NSW will pay up to 50 of out-of-pocket expenses per treatment (this may mean no additional costs for you) up to a maximum of 300 per family for the first six treatments. Expenses can be claimed individually or at the completion of the sixth treatment. Please visit our website for full details and to download the claim form. And remember HeartKids is here to help. I just wanted to say thank you so much for contributing to my bereavement counselling. It really helped towards the costly bill and enabled me to continue seeing my counsellor until the first anniversary of my daughter s passing. Thank you HeartKids for providing such a fantastic and helpful service. It really meant the world to me. Melanie Taylor mum to Heart Angel Alice Grace Taylor D i D yo u k n ow T h e r e a r e H e a r t K I d s o r g a n i s a t i o n s i n Q u e e n s l a n d Vi c t o r i a S o u t h Au s t r a l i a a n d We s t e r n Au s t r a l i a a s we l l a s h e r e i n N ew S o u t h Wa l e s H e a r t K i d s Au s t r a l i a ov e r s e e s t h e g r o u p heart matters NsW magaziNe 2015 19 Corporate support HE AR TKID S N S W RE LI ES H E AV ILY O N OUR D E D ICATE D IND IV ID UA L F UND RAIS E R S A N D C OMMUNITY S P IR IT. BUT CO R P O R ATE SU PPOR T ALS O P LAYS A BIG R O LE IN TH E S UC CE S S O F O UR ORG AN IS ATIO N There are actually many ways businesses can get involved with HeartKids NSW and 2014 was proof of this. The headline event on our calendar was our annual Tiny Tickers Ball (pictured above). With a Brazilian Carnivale theme more than 420 people attended the Westin Sydney on August 30. The event provided a brilliant opportunity for platinum sponsors PKF Lawler and Viatek as well as dozens of gold silver event and prize sponsors to showcase their brands. It was a night filled with emotion fun and dancing. HeartKids NSW is proud to announce that we raised just under 110 000 through that one event which will enable our team to continue providing valuable support services to our heart kids and their families. An enormous thank you goes out to all our guests for digging deep and of course our loyal volunteers. Our friends at Alpine Nurseries held their fifth annual Spring Garden Tour on October 31. It was a sparkling Sydney day with 120 guests in attendance and the majority of them being repeat attendees. This year s tour showcased five amazing and very different gardens in Sydney s eastern suburbs. Over lunch at the beautiful Vaucluse house HeartKids NSW Family Support Coordinator Jenny Azzopardi spoke about her journey as the parent of a heart kid and her role in the organisation. The day concluded with a champagne afternoon tea in the garden overlooking the harbour. The tour raised some 24 000. Alpine Nurseries lead by Peter Knox have now raised well over 100 000 for our charity and we are very grateful for their support. In 2014 HeartKids NSW began a relationship with Corporate Challenge Events. This organisation arranges team-building events for companies. Teams are each required to assemble a bike with the bikes then donated to charity. Our heart kids were some of the lucky recipients in 2014. The big smiles on their faces when they saw their shiny new bikes was priceless. HeartKids NSW is also very lucky to partner with Westfield Hornsby as their community charity of choice. Twice a year Westfield Hornsby holds a Giveability Day getting the community and retailers onboard to raise money and awareness to support a chosen charity. Westfield Hornsby aims to raise 20 000 each year for HeartKids NSW through these events. And finally HeartKids NSW must send a huge thankyou to IKEA for their corporate support in 2014. The amazing team from IKEA Business came out and helped us fit out our new office space in Wentworthville. It was a BIG day and the HeartKids NSW girls are now flatpack pros So is there a way your business can help ours It might be as simple as hosting a moraleboosting team activity day or a staff morning tea Or maybe you could pop a HeartKids donation tin on your front counter Maybe you d like to offer our Hearts at Work payroll giving program to your staff where they can donate a nominated amount (anything from 2 a week) from their pre-tax pay for direct remittance to HeartKids NSW. Easy. For more about how your business can pitch in either financially or through in-kind support head to our website s How you can help tab. 20 heart matters nsw magazine 2015 in A moTHer s words F ro m p r e g n a n cy b l i s s t o d i a g n o s i s h e a r t a c h e . F r o m a j oyo u s b i r t h t o a n a n x i e t y - fi l l e d wa i t t h ro u g h o p e n - h e a r t s u r g e r y. F ro m fi g h t i n g f o r h e r l i t t l e l i f e t o b e c o m i n g a c h e e ky f u n f u l l - o f - l i f e t o d d l e r. Har per s parents couldn t be more grateful. This is their stor y WORD S AS hlee MAR tin The journey begins Matthew and I were 12 weeks in to our pregnancy and had just seen the first glimpse of our unborn baby. We were blissfully unaware of what we were about to be told. Our doctor informed us that our baby had a very high likelihood of numerous syndromes and wanted to carry out further testing immediately. I was booked in for blood work scans and a CVS the next day. Results came back and we were shocked to find out that our baby had none of these syndromes and that in fact it could be something more serious congenital heart disease. With our baby s heart being so very tiny at this stage we had to wait until the 16-week mark to have further scans and our fears were confirmed. Our baby was diagnosed with Hypoplastic Right Heart Syndrome with Pulmonary Atresia. HRHS is the underdevelopment of the right side structure of the heart hers being so underdeveloped it was barely existent. In terms that we could understand our baby basically had half a functioning heart. But the cardiologists had a plan. We were to give birth in Sydney and our baby was to have heart surgery ASAP . Life afTer diagnosis Harper Raine made a safe arrival into the world before she was whisked off to intensive care at The Children s Hospital at Westmead for monitoring. At just three days old Harper underwent her first heart surgery to have a BT Shunt put in. It was possibly the longest most terrifying 7.5 hours of our lives. All went well though. She was swollen and covered in tubes and machines from head to toe when we saw her after surgery. Tears of relief sadness gratitude and of course happiness streamed down our faces. Our precious little girl had made it past her first hurdle. When Harper was five months old she was ready for her second surgery the Glenn Shunt procedure. By this age she was full of life active and as cheeky as ever but it was time to hand her over to surgeons again. It was just as hard this time as it was the first time if not harder. She put us at ease when she looked back at us with her beautiful beaming smile unaware of what she was about to endure. Once again we had an agonising wait to see our girl. Time had passed and she was in intensive care recovering well (pictured above left) and by day three she was smiling again. We were home nine days later. a precious hearT mended We have had our ups and downs with Harper s health over the past two years but if she can get through what she went through in her first few weeks of life we know Harper can overcome anything. Harper has quarterly check-ups to make sure everything is going well and so far she is doing amazingly. She will undergo her third and final surgery in the years to come but for now she is continuing to be our beautiful brave kind hearted and cheeky little munchkin (pictured above right). how hearTKids heLped Whilst in hospital with Harper Matthew and I were introduced to a member of HeartKids. She gave us the support we were after in a heartbreaking situation. We are so thankful to HeartKids for everything that they do not only for us and Harper but for other families going through a similar situation. We were so impressed by their passion and dedication to helping others. If there s one thing that we learned along the way it is to never give up. Life has its miracles and our miracle is Harper. heart matters nsw magazine 2015 21 MAKING A DIFFERENCE There are so many amazing people associated with Hear tKids NSW for a va r i e t y o f r e a s o n s e a c h b r i n g i n g a u n i q u e p e r s p e c t i v e t o t h e o r g a n i s a t i o n t h a t s u p p o r t s c h i l d r e n w i t h b ro ke n h e a r t s . F o r a l l t h e i r d i f f e r e n c e s t h e s e p e o p l e a l l s h a r e a c o m m o n g o a l t o s u p p o r t a n d s h a r e t h e i r l ov e f o r t h e s e l i t t l e fi g h t e r s Daniel Cummins Hackett ACT How did you become affiliated with HeartKids NSW Back in 2008 I was fortunate to have the opportunity to compete in a Tarmac Rally series. I thought it would be a good opportunity to put some HeartKids signage on the car in memory of my little brother William who had sadly passed away in 2001 aged 12. So I got in contact with HeartKids got some stickers made up and added to the race car. We have quite a few people notice the signs and met a few competitors that had a heart kid. You have made a significant financial contribution to the HKNSW. How much have you raised in total We have raised about 45 000 so far and we are aiming to get that total close to 60 000 by the end of this year. Tell us how you did that Will had always loved cars he had a huge Matchbox car collection loved playing racing games on the Playstation and the last thing I talked about with him sitting beside his hospital bed was the cool black car he wanted to get when he got his licence. It turned out that I got that cool black car a few years later and this eventually became my race car. In 2009 William would have turned 21 and I really wanted to do something to celebrate the occasion in his memory and also help others that are in or have been in similar situations. Continued on page 23 22 heart matters nsw magazine 2015 Continued from page 22 I had been helping out Southern District Motorsports Association and decided to see if they would be interested in letting me run an event with HeartKids as a beneficiary. They loved the idea and with the support of many helpers and local businesses the HeartKids Hillclimb was born. Why do you choose to fundraise for HeartKidsNSW Because of the support they provide to help kids with CHD and their families. I know first hand how much it helps to have people to support you people that have been through similar experiences. I also like to raise awareness of how prevalent CHD is. It was therapeutic to have a reason to talk with people about CHD and it made me realise just how many people I knew who had been touched by CHD. What drives me to put on the event each year is seeing the smiles on the faces of heart kids as they get a ride in one of the race cars absolutely priceless. They remind me of the strength my little brother had in the face of adversity. Why should other people jump on the fundraising bandwagon and or lend a hand through sponsorship It is so rewarding to help others. I marvel at the strength of these kids to put up with so much yet still smile and enjoy life. If I can help to put a smile on their faces that makes my life so worthwhile. About six months after the first event we ran for HeartKids one of my mates that helped out found out that he was going to have a heart kid. The support that HeartKids provided them with information about what to expect counseling help when in hospital contacts with others that had similar experiences it all helped him and his wife so much. Do you have any words of hope for the families of newly diagnosed heart kids Talk with families that have been through similar situations because you are not alone you ll be surprised by how many people know someone with CHD. And if your little heart kid ever wants a ride in a race car let me know and we ll make it happen Barney Bedelis Bayview Con Dedes Woolwich Dock How did you become affiliated with HeartKids NSW Through a close friend of mine Glenn Nicholls. I was organising an event and needed a charity to donate the money to. Glenn opened my eyes to HeartKids. You have made a significant financial contribution to the HKNSW. How much have you raised in total Over the past three years I have proudly donated 27 500. Tell us how you did that I have been organising a Car and Bike Show on the Northern Beaches for the past three years. Enthusiasts meet at Pittwater Rugby Park to display their vehicles. We get people from all over Sydney attending this event. There are all makes and models of cars and bikes from vintage and classic through to hot rods and muscle cars. Trophies for the best cars and bikes are sponsored by local businesses and awarded to the best entries. We also have raffle prizes generously donated by local businesses. The community really gets behind this event with more than 1200 people walking through the gate last year. Why do you support HeartKids NSW Having my eyes opened to HeartKids made me see what other people go through. I am very fortunate to have two children (young adults now) who have always had good health. Continued on page 24 How did you become affiliated with HeartKids NSW At an event in 2002 for what was then an organisation called North Shore Heart Research now known as Heart Research Australia at Dedes Restaurant. I remember vividly thinking that it would have been of great comfort for my mother and father to have had an organisation such as HeartKids around in 1976 when I had my first open heart surgery at age six. You have made a significant financial contribution to the HKNSW. How much have you raised in total Over the years Dedes Waterfront Group has raised well into six figures which we as a team (and of course me personally) are really proud of. One of the greatest things though regardless of the quantum is to actually see what the donated funds go directly into the initiatives and devices that assist the kids and families that need it. Tell us how you did that We are very blessed to have some fantastic hospitality venues and we have over the years incepted some food-driven concepts to our guests and added HeartKids NSW as a valued affiliate. I also went for a 100km stroll from Wollongong to Woolwich last year which raised more than 80 000 of which half went to HeartKids NSW. Continued on page 24 DiD you k now Childhood hear t disease is the bigges t killer of Aus tralian kids under one Eve r y d ay in Aus tralia eight ba bies are bor n wi th a hear t defect. Tha t s m ore than 2200 ba bies each year heart matters nsw magazine 2015 23 NeW iNcome StreAmS A key p r i o r i t y fo r H e a r t K i d s N S W h a s b e e n t o d i v e r s i f y i n c o m e s t r e a m s t o m i t i g a t e r i s k . 2 0 1 5 w i l l s e e t h e c o n t i n u a t i o n a n d i n t r o d u c t i o n o f s o m e e x c i t i n g n ew f u n d r a i s i n g p r o g r a m s WORDS DaviD R OSe HeaRtKiDS NSW CeO To increase and deepen our commitment to family support programs and to fund lifesaving research HeartKids NSW has leveraged many opportunities to diversify our income channels. RegulaR giviNg The Heart Champions Regular Giving program was established to provide supporters with an easy way to make an ongoing contribution to our work while helping to ensure the organisation s long-term viability. We undertook intensive campaigning of the Heart Champions Regular Giving program to our existing supporter base in 2014. This resulted in a number of new sign-ons and we are pleased to say this vital new component to our fundraising mix is gaining ground. WoRKplace giviNg Under the Workplace Giving strategy which has been informed by industry best-practice focused work continues with the aim to leverage our existing base and to cultivate new opportunities to grow this income stream. gRaNtS For the second consecutive year the grants program has delivered strong results. HeartKids NSW has been successful in securing and renewing important funding partnerships with a range of philanthropic and corporate trusts and foundations local councils and clubs (through the ClubGrants program). Importantly this fundraising stream has enabled us to maintain existing programs in support of our heart families as well to expand our service offering as per the two examples below Heartclass For Kids supported by auDa Foundation HeartClass for Kids is a web-based platform targeted at school peers of primary school-aged children with CHD. This new program will help ensure that young CHD patients gain the social inclusion empathy and acceptance they need from their peers while also highlighting their bravery in facing life with CHD. Hearts local Newcastle permanent charitable Foundation Web-based Hearts Local was developed to ease anxiety for regional families travelling to the city for treatment. Hearts Local prepares families for a metro hospital stay and familiarises them with the environment and procedures that will take place. Continued from page 23 Continued from page 23 Barney Bedelis It saddens me to think of the pain that heart kids parents and the heart kids themselves must go through. I knew this was the charity that I wanted to support. Why should other people jump on the fundraising bandwagon and or lend a hand through sponsorship HeartKids is a great organisation that makes a difference to the lives of not only the kids and parents but the information is relayed to extended family members as well. The helpful information and support eases a lot of stress about the unknown. By spreading the word and doing my events I hope that it gets the organisation more recognition. The more people that know about HeartKids the more chance people will donate and fundraise for them. Do you have any words of hope for the families of newly diagnosed heart kids I feel deeply for those who have to endure such pain in what should be a special time in their lives. Sometimes the best and worst times in your life coincide. Never lose hope. Stay strong Stay positive and grasp all the help and support that is offered. You never know how strong you are until being strong is the only choice you have. con Dedes Why do you support HeartKids NSW My incentive to raise awareness and funds for HeartKids is fairly obvious as I am part of this elite group . Another driver is knowing that under the stewardship of David Rose and his team at HeartKids NSW we feel very comfortable that the funds are being utilised for their best use. Why should other people jump on the fundraising bandwagon and or lend a hand through sponsorship Given that eight babies every day are born with heart disease in Australia its prevalence suggests that whatever we can do as an individual group or a community and business to raise awareness and vital dollars the better the chance that we will benefit from the great work that HeartKids do through research support awareness and advocacy. Do you have any words of hope for the families of newly diagnosed heart kids Today when a beautiful child is born with heart disease we are so blessed to have organisations such as HeartKids that can talk and shed light on the fantastic technological advances in modern medicine and care for the families in and after their hospital stay. 24 heart matters nsw magazine 2015 THings To Do in HospiTal W h e t h e r yo u a r e t h e p a t i e n t o r t h e p a r e n t a s t a y i n h o s p i t a l c a n b e q u i t e t e d i o u s i f yo u d o n t h a ve s o m e i n t e r e s t i n g a c t i v i t i e s o n h a n d t o p a s s t h e t i m e . T h e key i s t o p l a n a h e a d . D ow n l o a d p l e n t y o f a p p s a n d p a c k s o m e f u n h a n d s - o n a r t a n d c r a f t a c t i v i t i e s . H e r e a r e a f ew i d e a s . . . booKs for KiDs anD parenTs THE PEANUTS GUIDE TO HAPPINESS & THE PEANUTS GUIDE TO LOVE By Charles Schulz For the beguiling Peanuts gang happiness is many things a warm blanket a snowy day a full supper dish but most of all happiness is being one of the gang. The much-loved characters also know a thing or two about love. The millions of faithful Charles Schulz fans and those who fondly remember that best-loved beagle and his friends will cherish these latest titles in the Peanuts Guide to Life series perfect for any generation. 14.99 each www.allenandunwin.com happens when a child is admitted to hospital. 5.00 www.heartkidsnsw.org.au SOMEONE WHO LOVES yOU By Steven Schuback Follow the story of Eddie a nervous young elephant experiencing his first day of school. The story tells mini readers that even when they feel alone someone who loves them is always close by. Like Steven s other work Someone Who Loves You is aimed at helping children feel more confident. Steven donates a large number of books to underprivileged Australian and international children through his Adopt a Book program. His Facebook page (Good Books for Kids) is a wonderful guide to the best kids reads. 9.95 www.stevenschuback.com RALF By Anne Crawford Ignored as a puppy Ralf the giant schnauzer had a barking problem and was to be put down when Caroline Lovick took him home. It soon became clear that Ralf loved children. He stopped barking and became a loving dog gently playing with her four children and warmly greeting others who patted him at the school gates. His potential as a therapy dog was obvious and before long he was working at Victoria s Royal Children s Hospital. Ralf was an instant hit with the terminally ill children and made worldwide headlines for his extraordinary ability to bring hope to the sick. Royalties go to the Royal Children s Hospital Melbourne and the Therapy Dog program. 29.99 www.allenandunwin.com SARAH S STORy By Netty Winkel Leisa Holzheimer & Fiona Henshelwood Follow Sarah as she prepares for a visit to hospital for surgery to repair her heart. An easy-to-read story that shows what usually HeartKids NSW are here to help... There are many ways our Family Support Coordinators can help you and your family while your heart kid is in hospital shouldertoleanon Comeandhaveachatandacuppa A with our Family Support team (who are also heart mums). Financialassistance Vouchersforthehospitalcafe Coles petrol Starbucks accommodation and other support. Information Tohelpyouonyourchild sjourney facilitieswithin the hospital and support events for when you go home. Call 02 9631 2600 to speak to a Family Support Coordinator w e b H a ve yo u p u r c h a s e d a ny H e a r t K i d s n s W m e r c h a n d i s e s e e p a g e 1 1 fo r m o r e i n fo r m a t i o n o n w h a t i s a va i l a b l e o r g o t o o u r we b s i t e t o d ow n l o a d a n o r d e r fo r m 26 heart matters nsw magazine 2015 Lotta L SCHOO AY FUN HOLID avel issue T he tr FRE ADEE R ADF E Lotta Art AND crAft SCHOOL HOLIDAY The colo FU N ur issue lotta magazine www.lottamagazine.com Australia s first ad-free kids magazine Lotta is released four times a year and is packed to the brim with hands-on art crafts games and activities for kids aged 5-10 years. At 10 per copy this is one magazine worth its weight in gold Check out the website for even more boredom-busting activities on the Lotta blog. ACT IV G TOY S URIN DMADE AY COLO PL HAN CRAFT GAMES G ART IN DRAW IT IES ART CR AF TS GAM ES ACTI VITIES Seedling diY Pirate treaSure maP www.bobbleart.com.au 24.95 meliSSa and doug Wooden heart cheSt www.bobbleart.com.au 16.95 KIDSPOt S tOP APPS fOr crEAtIVE KIDS night zookeePer telePorting torch ages 4 A beautiful drawing app where kids are encouraged by a daily prompt to draw magical animals to add to their zoo. They can play with their animals and older kids can write stories about them. You can even send your child a personalised challenge to create something via the parent dashboard. FaceS imake ages 5-10 This award-winning app lets kids create collages using everyday objects. There is an instructional video led by artist and children s book illustrator Hanoch Piven who introduces kids to art techniques like perspective. Star Walk kidS ages 4 Simply hold your iPhone or iPad up to the sky. The app follows your motions using an in-built gyroscope so it can identify consolations in real time. A friendly narrator tells you all about what you re seeing in the stars. Cute little cartoons bring the consolations to life on the screen. This is a beautiful way to bring the night sky to life for curious kids. FoldiFY zoo ages 9 11 A neat app for older kids they can create 3D drawings of animals on the app and print them cut them out and fold them up to create something real. Even if your child doesn t rate their drawing skills there are heaps of templates they can easily modify. toca Salon me ages 3 6 This app is plain good fun. Kids can upload a photo of themselves and then are free to style their own hair add accessories and create something wacky and wonderful. try also Friendstrip (ages 6 ) colar mix (ages 3 ) and comics in the classrom (ages 8 ). For more visit www.kidspot.com.au D i D yo u k n ow H e a r t d i s e a s e i s o n e o f t h e m o s t c o m m o n b i r t h a b n o r m a l i t i e s . A b o u t h a l f of all children diagnosed with hear t disease require surger y to correct the defect heart matters nsw magazine 2015 27 EaT your HEarT ouT W h e n h e s n o t f u n d r a i s i n g fo r H e a r t K i d s N S W h e a r t k i d C o n D e d e s o t h e r p a s s i o n i n l i f e i s f o o d a n d h o s p i t a l i t y. T h e D e d e s Wa t e r f ro n t G ro u p r u n s s ev e n s t u n n i n g v e n u e s a c r o s s S y d n ey. H e r e s j u s t a t a s t e . . . r e c i p e S t e p h e n S e c k o l d e x e c u t i v e c h e f f ly i n g f i S h r e S ta u r a n t B a r BLuE-EyE TrEVaLLa VEroNIQuE WITH SaLT aND VINEGar PoTaToES Serves 6 trevalla 190g unsalted butter chopped 4 x 200g blue-eye trevalla fillets 25g ( cup) ground hazelnuts 2 teaspoons olive oil 12 green seedless grapes peeled and halved 40g roasted hazelnuts peeled 1 tablespoons baby capers 1 tablespoon lemon juice 1 tablespoon flat leaf parsley finely chopped Salt aNd vINeGar MaSh 6 sebago potatoes scrubbed 60ml ( cup) white wine vinegar 300g cr me fra che Method For mash place potatoes in a pan cover with water and bring to the boil. Cook for 20 minutes or until tender. Drain then cool slightly. Peel and cut into 3cm dice then place with vinegar in a small pan. Stir over medium heat until hot then stir in cr me fra che and cook until potatoes just start to break down. Season and keep warm. For fish fill a sink with cold water. Cook 150g butter in a small pan over medium heat whisking until butter is nut brown. Place base of pan immediately in the cold water to stop further browning. Dust top of fish with ground nuts and season with salt. Heat the remaining butter with oil in a separate large frying pan and fry fish coated-side down first for 4 minutes each side or until just cooked. to serve spoon mash among plates and top each with a piece of fish. Remove fat from fish pan and discard then pour in browned butter. Add For me grapes are a quintessential summer fruit. obviously they are a great addition to cheese and fruit platters but grapes are wonderfully adaptable and can be used in either sweet or savoury dishes. this recipe is always popular with our clients. While the flavours remain the same we re-invent the components each summer. FYI v ronique is a French cooking term applied to savoury dishes (usually fish or chicken) that are prepared with white seedless grapes. Stephen Seckold exec Chef Flying Fish grapes nuts capers juice and parsley and cook over medium heat until warmed through. Top the fish with this sauce and serve. 28 heart matters nsw magazine 2015 DINING occasion from casual gatherings to the special events in your life dedesgroup.com.au 1800 EVENTS FOREVeRY Pro SPonS u d o of r S Hear tK nSW i dS JBW pyrmont the dock woolwich Westfield miranda src abbotsford pier 2 walsh bay abbotsford cronulla lavender bay 2014 THe year THaT WaS W h a t a ye a r 2 0 1 4 wa s fo r H e a r t K i d s N S W F r o m h a r b o u r c r u i s i n g t o a s c e n i c fl i g h t we d i d i t a l l . H e r e a r e s o m e o f t h e e x c i t i n g t h i n g s w e g o t u p t o ... FEBRUARY SWEETHEART MONTH SweetHeart Month kicked off at Westfield Hornsby on February 13 with volunteers selling merchandise and hosting a private screening of the movie Are we officially dating with all proceeds donated to HeartKids NSW. On February 14 our Helping Hearts Community team over took the CBD to raise awareness of Childhood Heart Disease and raise funds. The day began at 6.30am as volunteers worked in droves around Wynyard Town Hall and Circular Quay stations selling Valentine s Day merchandise to loved-up commuters spreading CHD awareness and celebrating SweetHeart Day. Along the way we met many people who were touched by HeartKids on their journey with CHD and many new faces willing to support our cause by making a donation. Our staff and volunteers helped raise more than 25 000 which will go a long way to supporting our special heart kids. Over the weekend of February 15-16 we also had volunteers at Ikea engaging with customers in a craft activity making hearts and writing messages of hope for our HeartKids in the Ikea caf . In other activities throughout the state we engaged with corporates schools preschools and other community groups who held fundraising activities such as Dress in Red days cake stalls and many other events. Our annual SweetHeart High Tea at the Novotel Sydney Olympic Park on March 9 closed our activities for Sweetheart month. to Motivate. A very delicious morning tea and lunch was kindly provided by Gemma Lee s Cafe and Cake Angels. Our lucky mums were also treated to an array of lucky door prizes including gift bags and hair straighteners donated by the Australian College of Education and Training. By the end of the day everyone was feeling energised and very spoilt and rightly so. AUGUST On August 30 we held our black tie 2014 Tiny Tickers Ball for the second year at the spectacular Grand Ballroom at the Westin Sydney. Read more about it on page 20. OCTOBER On October 26 we held our first Grandparents High Tea to acknowledge the wonderful support grandparents give our families and our heart kids. Many heart kid parents couldn t cope without the love and support of their own parents in times that are so very stressful. We had a fabulous high tea at the Novotel Homebush with champagne on arrival savoury starters and then beautiful three-tiered cake stands full of sweet temptations. Lucky door prizes were presented endless tea and coffee was drunk and a wonderfully convivial afternoon was enjoyed by all. On October 30 parents came together at the Wenty Leagues club for a school readiness information evening. Guest speakers included heart mum and primary school teacher Leonie Saunders and Karen Leclair Clinical Nurse Consultant from the Heart Centre for Children at The Children s Hospital. They spoke about getting heart kids ready for preschool school. It was a very informative evening with some great tips passed on to make the transition into school as smooth MAY HeartKids NSW hosted our annual Mother s Day Pamper Day at The Children s Hospital at Westmead on May 2. Make-up manicures massage and makeovers were the order of the day as our mums were treated to a day of pampering from the lovely ladies at The Australasian College Broadway and Massage w e b We d l ove yo u t o s u p p o r t t h o s e b u s i n e s s e s w h o s u p p o r t u s . To fi n d o u t w h o o u r c u r r e n t p l a t i n u m g o l d s i l ve r a n d b ro n z e s p o n s o r s a r e c h e c k o u t w w w. h e a r t k i d s n s w. o r g . a u s p o n s o r s 30 heart matters NsW magaziNe 2015 as possible. Guests received an info pack that also contained a copy of Sarah s Story a book written about a young girl having a heart operation. It was suggested that this book could be read to the child s class to give them a better understanding of CHD and then donated to the school s library. NOVEMBER On November 2 Sydney turned on a perfect day for our inaugural Dad s Day event with 13 of our heart dads granddads brothers and mates enjoying a two-hour harbour cruise on Sydney Tall Ships. The guys were treated to a buffet lunch open bar and all the sights our beautiful harbour has to offer. A few dads even braved the mast climb. All enjoyed the day thoroughly and HeartKids NSW will now host this event annually. On November 22 six very excited heart kids and their mums met at Kingsford Smith Airport to board a Qantas Boeing jet for a one-hour scenic Jumbo Flight over Sydney Newcastle and Wollongong. Three of these children had been together in Intensive Care six years ago. Many had never flown before and all were feeling both excited and nervous. The flight was full with fellow passengers coming from other charities. Qantas donated the plane Caltex donated the fuel and the cabin crew donated their time. Our thanks to The Rotary Club of Turramurra who organise this wonderful experience for some of our kids every year. On a beautiful warm night in November HeartKids NSW were delighted to thank some of our very special supporters through our Thank You Evening. Our friends from Dedes on the Wharf supplied some beautiful refreshments for our guests as they were updated on our very successful and productive year at HeartKids through presentations from Jayne Blake Chair of HeartKids NSW and our CEO David Rose. Special guest speaker Michelle McElduff Clinical Psychologist from The Heart Centre for Children also gave the audience an insight into the valuable work being conducted at The Children s Hospital Westmead. To end the evening our special Thank You Angels DVD was also shown. Late in November HeartKids NSW held its annual Christmas Party at William Clark College at Kellyville. The sun shone as 200 members enjoyed a day of activities free entertainment and a barbecue lunch. There was something for everyone at the party including a magic show face painting and jumping castle for the littlies The Gamerz Van and slushies for the older kids as well as a coffee van for the big kids. Of course there was also a special visit from Santa who handed out presents to all our heart kids and their siblings. HeartKids NSW would like to say A BIG THANKYOU to Foreverland Entertainers Funtime Jumping Castles and Slushies Faces R Us Gamerz and Coffee2U for their participation and support and for helping to make the day the success it was. And of course there s a special thank you required for our members and the volunteers who also assisted. We are very grateful. D i D yo u k n ow T h e r e a r e s o m e r e a l l y i n s p i r a t i o n a l h e a r t k i d s t o r i e s o n o u r w e b s i t e To r e a d m o r e a b o u t t h e s e l i t t l e fi g h t e r s v i s i t w w w. h e a r t k i d s n s w. o r g . a u w h a t s - o n s t o r i e s heart matters NsW magaziNe 2015 31 ArouNd tHe grouNdS H e a r t K i d s N S W b o a s t s a t h r i v i n g c o m mu n i t y o f s u p p o r t e r s r i g h t a c r o s s t h e s t a t e . H e r e s a l o o k a t s o m e o f t h e f a b u l o u s r e g i o n a l ev e n t s t h a t w e r e e n j oye d i n 2 0 1 4 CANBERRA What a fantastic year for HeartKids in the Canberra area in 2014 With HeartKids NSW s regional program expanding and more local members joining all the time the support for our CHD families is just getting stronger and stronger. Paediatric cardiology clinics have increased in frequency at Canberra Hospital which is great for local families saving them a six-hour return trip to Sydney for their regular check-ups. HeartKids has been working with Canberra Hospital to provide extra support to CHD families at these clinics which is also a great way to spread the word about HeartKids. There have also been lots of fun get-togethers and events for our families in Canberra from Easter egg hunts to magic shows the circus and car racing. Some of our lucky members attended a Brumbies rugby game and even met the players. Others were treated to laps in the race cars at the annual HeartKids Hillclimb which is always a great day and very successful fundraising event. We have also been lucky to be supported by the ACT Speedway and Legend racing cars which has been a lot of fun. In August we held a Mad Hatter s Tea Party at beautiful Adore Tea in Gold Creek as part of the national HeartKids Cuppa for Kids campaign (pictured below right). It was a lovely event with plenty of fun fine food and crazy hats. We ve also been fortunate this year to have quite a few of our Canberra families attend the first ever HeartKids NSW regional family camp. As 2014 wound down the final stage of this year s Ride for HeartKids took place. The ACT boasted a fantastic group of dedicated riders (including two heart kids ) who did some serious cycling while raising awareness and funds. The annual Christmas party brought together around 100 people to celebrate some wonderful achievements for our local families from meeting the challenges of having surgery to overcoming difficult battles with illness to celebrating 12 months surgery free. The families had a wonderful time enjoying a barbecue Christmas presents delivered by Santa games and face painting. ORANgE It has been a great year in the Central West. We hosted the HeartKids Rugby Cup (pictured above right) and the HeartKids Netball Cup which was sponsored by wonderful supporters of HeartKids - the Robin Hood Hotel. Both events were a great success and provided many families with the opportunity to be taught some great skills and drills by high-profile athletes. Our Valentine s Night event was fun and also a brilliant fundraiser with great support from Hotel Canobolas. And Xanthe Keegan (pictured below) 11 decided to go Hairless for HeartKids and shaved her head at the Central West Xmas party after fundraising 3000. Considering Xanthe s age this was a fantastic and inspiring thing for her to do. NEwCAstlE HuNtER 2014 was also a busy year for HeartKids families in Newcastle and the Hunter. We celebrated Awareness Month in February with a high tea fundraiser mid-year family barbecue Fun Flight and the annual Christmas party. Our Queens of Hearts High Tea in August brought together 40 families and friends affected by CHD. It was held at the Belmont 16 Foot Sailing Club overlooking beautiful Lake Macquarie. Attendees learned about the realities of living with a child affected by CHD (thanks to our guest speaker Rebecca Johnson) and then enjoyed delightful food fun raffles and auctions with all proceeds going towards supporting families within the region. The mid-year barbecue was a lovely event allowing local HeartKids families to meet. Many new families joined us for an afternoon of fun and food with many new friendships formed. went s avely he br HeartKid Xant s for les Hair Ma dH atte rs T ea P arty 32 heart matters NsW magaziNe 2015 y Rugb Club nge - Ora Regional Roa d Trip Regio ily Ca Fam nal mp HEARTKIDS FAmIly CAmp Over a sunny weekend in March 40 families attended our annual HeartKids Family Camp at Myuna Bay. This was a HeartKids record and we were delighted to host our biggest Family Camp yet with families from all over NSW attending. Some came from as far away as Canberra and Orange leaving the rain behind for a weekend of fun and activities in the glorious sunny weather. It was a great opportunity to catch up with old friends and make new ones and best of all mums didn t have to cook any meals for three whole days Over the weekend we celebrated a number of birthdays with delicious cakes (that looked almost too good to eat) generously donated by Cake Angels. Everyone was awake early and eager to get started on the many different group activities we had on offer on the Saturday morning. Canoeing the giant swing and the flying fox were all popular among the older kids and even the parents while the little ones enjoyed craft damper making putt putt golf and exploring with their new friends. Our lazy Sunday saw us relaxing by the pool before we all said goodbye until next time. Our 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. Family Camp for 2015 is again at Myuna Bay on March 27-29. We are looking forward to it being an even bigger and better camp. perfect conditions for a water fight. Balloons pistols bottles and any vessel that could carry water was deemed fair game to soak anybody who was out in the arena and even those who were not The trip back to the airport was broken with a morning at Scenic World. This was a great opportunity for both interstate campers and those from regional NSW to visit one of the state s most beautiful areas. The last day is always a sad one as friends who only meet up once a year say goodbye until Teen Camp 2015. Thanks must go to HeartKids Australia for all the hard work that goes into making these camps happen to the staff at Lutanda and also Scenic World for a great morning. nEw In 14 REgIonAl RoAD TRIpS REgIonAl CAmp Two new events for 2014 were Regional Road Trips and the Regional Camp. The events were developed to provide support to the families who may not be able to have face-to-face contact with the Sydney-based Family Support Coordinators because of travel distance. Family Support Coordinator Kim Mackie conducted our first Regional Road Trip visiting Port Macquarie Taree Coffs Harbour Armidale Tamworth and Singleton. We held community stalls in major shopping centres in each town met with local heart families visited major regional hospitals and met with social workers midwives paediatricians and a variety of hospital support staff. HeartKids brochures and posters were provided to the hospitals and we were well received in each of the towns. On November 21-23 19 families attend the inaugural HeartKids NSW Regional Camp at Kianinny Resort Tathra on the far south coast. It was a wonderful location with loads of activities for members of each family including swimming canoeing orienteering bushwalking archery bush craft volley ball and mini golf. Families came from Bulli Sydney ACT Pambula Batemans Bay Delegate Broulee and even Gulgong and all said what a wonderful opportunity it was to meet other HeartKids families and know that they weren t alone. On the Saturday night we were entertained by the Great Samboni a magician who kept everyone enthralled and in stitches. On Sunday many families ventured to the beach with one 7 year old from the ACT very excited as she had never seen the ocean before. HEARTKIDS TEEn CAmp The 2014 HeartKids Teen Camp was held in January at Lutanda Mount Victoria. More than 80 teens came together for a weekend of activity friendship and fun. Previous campers met up with old friends and made new friendships with first-time campers from all over Australia. The teens spent the weekend in groups doing activities including archery swimming BMX riding high ropes course working together to build and climb a crate tower and zipping down a flying fox. Many fears were overcome as campers who were scared of heights were lining up for second turns at activities they never thought they could do. The circus-themed Saturday evening was a hit and the costumes were great. Circus performers mixed with animals of all kinds and there was even a triceratops Sunday afternoon saw heart matters NsW magaziNe 2015 33 heartkids NsW directory Hospitals For emergencies call 000 the children s Hospital at Westmead www.chw.edu.au phone 02 9845 0000 address Cnr Hawkesbury Rd and Hainsworth St Westmead Sydney NSW sydney children s Hospital (randwick) www.sch.edu.au phone 02 9382 1111 address High Street Randwick NSW pregnancy Birth & Baby Helpline 24-hour national line providing confidential information support and counseling. www.pregnancybirthbaby.org.au phone 1800 882 436 Department of social services www.dss.gov.au phone 1300 653 227 centrelink www.centrlink.gov.au parentline counselling service Free professional help for parents or carers of children 0-18 www.parentline.org.au phone 1300 1300 52 carers nsW www.carersnsw.org.au phone 1800 242 636 Kidsafe nsW www.kidsafensw.org phone 02 9845 0890 travel ronald mcDonald House (Westmead) www.rmhc.org.au westmead phone 02 9845 0600 address Redbank Road Westmead NSW ronald mcDonald House (randwick) www.rmhc.org.au randwick-nsw phone 02 9382 1622 address 149 -151 Barker Street Randwick NSW a guide to the children s Hospital at Westmead Information about procedures in hospital accommodation parking food outlets and support services can be found at www.chw.edu.au parents stay parent_handbook.pdf general information including staying at the hospital and hospital facilities at the sydney children s Hospital randwick www.sch.edu.au general isolated patients travel and accommodation assistance scheme (iptaas) www.health.nsw.gov.au transport phone 1800 478 227 care Flight www.careflight.org phone 02 9843 5100 Bereavement sids and Kids 24hr bereavement support and infant sleeping information Mon Fri 9am-5pm www.sidsandkids.org phone 1300 308 307 compassionate Friends Organisation offering friendship and understanding to bereaved families. www.thecompassionatefriendsnsw.org.au phone 02 929 02355 lifeline www.lifeline.org.au phone 13 11 14 (24 hour crisis line) Bereavement c.a.r.e. centre phone 1300 654 556 aDolescent services Kids Help line www.kidshelpline.com.au phone 1800 55 1800 Headspace Offers specific services for people aged 12-25 going through a tough time. Over 70 headspace centres across the country offering online and telephone support. www.headspace.org.au phone 03 9027 0100 community services australian Breastfeeding association www.breastfeeding.asn.au phone 1800 686 268 (helpline) Heart centre for children www.heartcentreforchildren.com.au phone 02 9845 2345 Heart support-australia national office phone 1800 432 782 34 heart matters nsw magazine 2015 For SS15 Haryono Setiadi explores the ambient fluidity of water & the ocean in our first designer collaboration the collection features sculptural silver twists and waves that mimic the movement of the ocean along with shimmering semi-transparent organic gemstones including moonstone & labradorite. AVAILABLE IN STORE & ONLINE FLAGSHIP BOUTIQUE WESTFIELD MIRANDA LEVEL 2 NEAR DAVID JONES (02) 8935 1650 GREGORYJEWELLERS.COM.AU a bi g th a n k yo u to o u r Pa rt n er s heartkids nsw Partners Eastwood heartkids national Partners