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Summer 2013-2014

Quarterly Magazine for Victoria and Tasmania

* * HeartKids at The Block *

Volume 23 Issue 4

2  5 Years of Heart Transplants Christmas Celebrations

support

awareness

research

advocacy


Matters of the Heart -

Chief Executive Officer Hi

On reflecting back on the Christmas period our thoughts, as always, were with our heart children and their families, some of whom will have spent their Christmas and New Year running to and from, or being stationed at, The Royal Children’s Hospital or other centres around the country. We also have very special thoughts for our Heart Angels and their families. And as always, the HeartKids Family Support team were on hand, or on call, to assist whenever they were needed. As we look back on 2013, I can advise you that 1881 people attended our RCH morning teas, we ran five member events attended by 1010 people and our Branch Coordinators held 75 events attended by 590 people. HeartKids helped fund two echocardiogram transducers at MonashHeart. We funded a $20,000 Cardiology Bursary, the production and printing of three brochures, purchased toys for play therapy and clinic and sponsored the Koala nurse of the month award at The Royal Children’s Hospital. On a national level HeartKids continued its commitment to funding world-class research into the causes of CHD. Currently we are planning for HeartKids Awareness Month in February. If you would like to register your interest in volunteering at one of many activities throughout the month, or if you would like to run your own activity, please give the office a call. The HeartKids Board recently approved the formation of a new Committee to directly assist with the development of our work in Family Support. It will assist us over the next twelve months and beyond to be better positioned in assisting those in regional areas and Tasmania. It will also help us become more active in teen transition as well as many other initiatives to enable HeartKids to provide even more of the outstanding support we already provide. I would also like to take this opportunity to thank our Ambassadors and the many, many members and supporters who conducted and attended our events throughout the course of the year. Again, on behalf of all at HeartKids, thank you for your continued support.

Warm regards Norm Hutton CEO

Our Team HeartKids Vic Inc Board 2013-2014 * Chairperson: Phil Riggio * Vice Chairperson: Wayne Crofts * Treasurer: Joseph Eid * Secretary: Phil Riggio * General Board Members: Terry Hopkins Ashley Koenig Tania Tytherleigh Claire Gluyas Anthony Flapper

HeartKids Vic Inc Employees * Chief Executive Officer Norm Hutton 0409 874 452 norm.hutton@heartkids.org.au * Support Manager Tracy Stanley 0478 091 773 tracy.stanley@heartkids.org.au * Family Support Coordinators Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids.org.au Amy Heafield 0421 518 366 amy.heafield@heartkids.org.au * Member Activities Coordinator Lynette McCoullough lynette.mccoullough@heartkids.org.au * Marketing and Relationships Manager Bea Tomlin bea.tomlin@heartkids.org.au * Fundraiser & Events Coordinator Pruedonce Bainbridge fundraising.victas@heartkids.org.au * Office Manager Sandra Zlatanovski sandra.zlatanovski@heartkids.org.au * Membership/Magazine Coordinator Margaret Patullo margaret.patullo@heartkids.org.au * Magazine heartkids@heartkids.org.au

HeartKids Vic/Tas

children with heart HeartKids Vic Inc proudly supports Victoria and Tasmania. disease and their families throughout r to the back page for For Tasmanian enquiries - please refe s’ contact details. our Tasmanian Branch Coordinator

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this magazine is of the personal stories in Permission to reprint any other articles may be Any . rson irpe Cha the or required from the author Vic Inc. ledgement to HeartKids reprinted with an acknow ine do not imply published in this magaz Please note that articles HeartKids Vic Inc. of s view not reflect overall endorsement and may d stories represent nions expressed in chil Also note that the opi are specific to each ails det l dica me and that personal experiences to your child’s, ilar sim ear app y ditions ma case. Although the con cific information spe re mo ng uiri Parents req other details may differ. . gist ir child’s cardiolo should check with the

cardiac nt Scarlett with mum Sam and RCH Front cover: Heart transplant patie surgeon Dr Yves d’Udekem Centre ren’s Hospital Educational Resource Photo courtesy of The Royal Child information for this edition. Thanks to all who sent photos and - send to: heartkids@heartkids.org.au ome welc ys alwa Contributions are s. ts On Call for printing our magazine Thanks to Fuji Xerox and Documen es. imag al processing of some digit Thanks to Gordon Patullo for post


Coming Events Shepparton Picnic Date & Time: Sunday 30th March, 10am - 2pm Venue: KidsTown, Midland Highway, Shepparton Courtesy of the Kiwanis Division 7 Clubs, families with a heart child or heart angel, their friends and extended family are invited to attend a free family picnic and fun day. Free entry to KidsTown Adventure Playground and a sausage sizzle lunch will be provided. Please visit www.kidstown.org.au for more information about the venue. To register, please book via www.trybooking.com/dybu RSVP by 16th March. For any information about the event, please contact Cheryl Alexander on (03) 5825 4005 or chezalex70@bigpond.com. Any problems with booking, please contact Lynette from HeartKids on 0418 548 879 or lynette.mccoullough@heartkids.org.au

Run for the Kids Date: Sunday 13th April We would like to have a large presence at this year’s Run for the Kids. Register at www.runforthekids.com.au - the first screen of the entry process will ask you if you wish to be part of a team. To join our team, select “I would like to search for an existing team” and enter HEARTKIDS VICTORIA. Click on the green tick icon to join the team. Once logged into our team, you can complete the entry process. There are two courses, each with several colour-coded sections for running, jogging, walking, walking with prams, etc. 15km event – Entry Fee $52 of which $31 is donated to The Royal Children’s Hospital Good Friday Appeal. Participants will assemble in the appropriate colour zone in Alexandra Avenue. 5.5km event – Entry fee $47 of which $29 is donated to the Royal Children’s Hospital Good Friday Appeal. Participants assemble in Boathouse Drive in time for the start of their colour zone.

Good Friday Appeal - 18th April, at a new location The annual Good Friday Appeal telethon is moving to the Melbourne Convention and Exhibition Centre in 2014. The telethon will be staged at MCEC’s Plenary, a fabulous 2,500 seat auditorium and the public will be able to purchase tickets to join the live studio audience, with proceeds donated to the Appeal. The state-of-the-art MCEC complex, which is entirely undercover, will allow the Appeal to expand activities such as the popular Kids Day Out program. Please visit: http://www.goodfridayappeal.com.au/ for all the details

Razzamatazz Show Date: Saturday 26th April Times: TBA Venue: Dallas Brooks Centre, 300 Albert Street, East Melbourne HeartKids will have free tickets to this show for your immediate family. If you would like to attend, please register your interest by 12th April on: www.trybooking.com/eaxp Please contact Lynette on lynette.mccoullough@heartkids.org.au or 0418 548 879 for booking enquiries. Unfortunately show times are not available at the moment so you will be contacted when the times are available.

In This Issue

3 Coming Events and Fundraisers 4 HeartKids Awareness Month 5 25 Years of Heart Transplants at RCH 6-7 HeartKids Christmas Celebrations 8 Transition Support Services at RCH 8 Tween Camp 2013 9 Adults with CHD 10 ‘Meet My Fighter, Hannah’ 11 Hospital Happenings 12 Fontan for Life; Farewell Jim Wilkinson 13 MonashHeart; BIG4 Deni Holiday Park 14 Support Matters; HKA News 15 Reflections 16-17 Kiwanis Sponsored Family Activities 18 FunFlight 2013; Branch News 19 Tasmania News 20-21 Heartfelt Thanks for Your Efforts 22 Starting School; Celebrations 23 Sponsors and Supporters 24 Diary Dates

Looking for an excuse to detox and get fit whilst raising funds for HeartKids? Well, now is your chance to participate in these iconic events: Saturday 1st March - Melbourne Swim Classic. Register for the HeartKids team at http://www. everydayhero.com.au/event/melbourneswimclassic Sunday 13th April – Run for the Kids. Register for our team “HEARTKIDS VICTORIA” at www.runforthekids. com.au Saturday 17th and Sunday 18th May – Great Ocean Road Marathon. Register for the HeartKids team at http://www.everydayhero.com.au/event/Run_Great_ Ocean_Road_HK Sunday 27th July – Run Melbourne. Register for the HeartKids team at http://runmelbourne.everydayhero. com.au/event/runmelbourne2014 Sunday 12th October – Melbourne Marathon. Details of our team to come.

Razzamatazz will dazzle and delight all ages both young and old. The 60 minute show (with no interval) features award winning and international performers blended with gorgeous dancers in spectacular costumes… acts of mayhem, comedy and magic create a variety show that is fun for the entire family. Please visit http://razzamatazzshow.com.au/ for further information. Sponsored by the Immune Deficiency Foundation of Australia (IDFA), a not-for-profit organisation that provides support for children, teenagers and adults who have Primary Immunodeficiencies and their families.

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HeartKids Awareness Month What is Sweetheart Day?

Be a sweetheart & help us send 1 million messages of love this February!

14th February is International Awareness Day for Congenital Heart Disease. HeartKids is embarking on a community awareness campaign and at the centre of this is the launch of our ‘SweetHeart Day’. On Valentine’s Day, Friday 14th February 2014 HeartKids will be working to raise awareness and funds to support our heart children and their families on this special day dedicated to love and giving. To support HeartKids, “Be a sweetheart and buy a virtual Valentine’s gift at www.sweetheartday.org.au or visit one of Federation Centre’s shopping centres and buy SweetHeart Day confectionery to support HeartKids. Or donate at http://www. everydayhero.com.au/event/Sweetheart_Day See our website for a list of the Federation Centres and their locations.

Visit rfgsweethearts.com.au

& send your sweetheart a message of love to help fight childhood heart disease.

For every message you send, RFG will donate 20 cents to HeartKids on your behalf.

“Can you shake that thing?” We are looking for volunteers to help us shake money tins at main train stations in the CBD and at suburban stations on Friday 7th February. Please see our website for details of the train stations we are requiring cover at and the times of shifts. http://heartkidsvictas.org.au/can-you-help/

Faces of CHD for Awareness Month During the month of February we will be featuring heart children, heart angels, heart teens and adults on our Facebook page and website. If you would like to participate, please send a photo and paragraph or two about your CHD journey to tracy.stanley@ heartkids.org.au

Launch of HeartKids KeepCups

Heart Kids A4.indd 1

9/01/14 8:00 AM

Tree Top Family Fundraiser An event for the whole family! An opportunity to work together as a family to fundraise.

Now is your chance to purchase your own HeartKids KeepCup in various bright colours. Prices are $12.95 for a 227ml cup and $14.95 for a 340ml cup. You will be able to purchase them through our office or at Zinc Café at The Royal Children’s Hospital.

Name our new bear competition Our new HeartKids teddy bear is now available to buy and be cuddled. But he doesn’t have a name… What do you think he should be called? If your chosen name for the teddy bear is selected by the children on Koala Ward at the end of February you will receive a $100 gift card. Please send in your teddy bear names to heartkids@heartkids.org. au along with your contact details.

We have our Raglan t-shirts back in stock Prices are $20 for adults and $15 for children and can be purchased through our merchandise form on our website: http:// heartkidsvictas.org.au/how-youcan-help/buy-our-merchandise/

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Fundraise $125 per Person and then get ready for an action packed family fun day at The Enchanted Adventure Garden on the Mornington Peninsula on Sunday 16th February, 10am start. Please see our website for all the details.

HeartKids Golf Day DATE: Friday 21st February 2014 LOCATION: 207 Boneo Road, Rosebud TIME: 8am registration and breakfast, 8.30 Siren and 1pm lunch

• Team of 4 = $380 • Team of 4 + hole sponsorship (18 available) = $1,000 • Team of 4 + refreshment cart sponsorship = $1,000 • Single player = $95 Please see our website for full details: http://heartkidsvictas.org.au/heartkids-golf-day/


25 Years of Heart Transplants at the RCH This year The Royal Children’s Hospital (RCH) celebrated 25 years of providing heart transplants to children and young people across Australia. Since its establishment in 1988, the RCH Heart Transplant Service has performed transplants for 120 patients, enhancing the lives of neonates through to young adults suffering end stage heart failure. The first transplant was performed on a 14-year-old boy on 5 October 1988. The operation required the collaboration of a large and dedicated team of clinicians, including then Director of Cardiology Jim Wilkinson and Director of Cardiac Surgery Roger Mee. At that time, heart transplantation was regarded as pioneering treatment. There was no local adult heart transplant service with which to share experience, knowledge about how to handle rejection was limited, and there were fewer medications available to prevent and manage Heart transplant patient Scarlett with mum Sam complications. Today, the team is no smaller and just as dedicated. Each heart transplant patient receives care from cardiologists, cardiac surgeons, perfusionists, theatre nurses, theatre technicians, cardiac anaesthetists, transplant coordinators, intensive care nurses, ward nurses, pharmacists, physiotherapists and many other supporting services. The RCH is the Nationally Funded Centre for paediatric heart transplantation – a status granted in 1991 by the Commonwealth Government – and patients come from all Australian states and territories to the hospital. The RCH is also a Nationally Funded Centre for lung and liver transplantation in children, and for the surgical treatment of hypoplastic left heart syndrome. Dr Robert Weintraub, cardiologist who manages the RCH Heart Transplant Service, said the service remains at the forefront of care among international transplant centres. “Our survival rates equal those of the world’s largest heart transplant centres and that’s a testament to the skill, commitment and enthusiasm of our entire team,” Dr Weintraub said. “We also collaborate with the Murdoch Childrens Research Institute and transplant centres across the United States on research programs to better understand diseases that might one day require transplantation and to improve outcomes for patients globally,” he said. Over the years, the service has embraced new technologies and procedures to improve patient eligibility for heart transplantation and achieve better clinical results. In 1988 the RCH performed Australia’s first heart-lung transplant. This program has evolved into the Nationally Funded Centre lung transplant service shared with the Alfred Hospital in Melbourne. In 2005, RCH cardiac surgeon Dr Yves d’Udekem began placing eligible patients on ventricular assist devices (VADs). This mechanical pump replaces the function of a patient’s failing heart while they wait for transplantation. The VAD can extend a patient’s life long enough for transplantation to be viable or, in very rare cases, allow the heart to recover from a severe viral infection to the point where transplantation might no longer be necessary. In 2009, the RCH performed Australia’s first paediatric ABO incompatible heart transplant. After being diagnosed with dilated cardiomyopathy, baby Scarlett McGowan was placed on the waiting list for an urgent heart transplant. To increase the chance of a suitable donor becoming available in time, Scarlett was listed for transplant with a heart from an incompatible blood type. Another development allows patients who would otherwise not have been considered for transplantation, to become eligible. When a patient develops antibodies that might increase the chance of organ rejection after transplantation due to previous heart surgery, a suitable treatment plan can be devised, which may include treatment to purify the blood plasma of antibodies thereby reducing the risk of organ rejection. Dr d’Udekem said the future of heart transplantation looked bright. “We will soon start using implantable forms of circulatory support which will allow more comfort and mobility for children awaiting transplantation, as well as lower rates of complications,” he said. At an event on 4 October 2013 young transplant recipients joined RCH clinicians past and present, who gave them another chance at life, to celebrate the anniversary. Amidst the celebrations, Dr Weintraub stopped to acknowledge that for every success his team witnessed, a family was hurting. “Without the courage and generosity of organ donors and their families, none of these transplants would be possible. Despite this, our organ donor rates are significantly below those of comparable countries in Europe and North America. “Organ donation is a selfless gift and I urge Australians to consider registering themselves as organ donors,” he said. To register as an organ donor, visit www.donatelife.gov.au Professor Jim Wilkinson Our thanks to RCH Corporate Communications for providing this article.

and Mr Roger Mee at the 25 year celebrations

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HeartKids families enjoying.... Geelong HeartKids Bendigo HeartKids

In November the Geelong Christmas party was held at Adventure Park. All the families had a wonderful day and the kids were again treated to a visit from Santa. Thanks to Big W Geelong for all the donations for the goodie bags.

Melbourne Storm Christmas Party

I was very fortunate to have the opportunity to attend the Melbourne Storm Christmas Party along with some other HeartKids families. We met at AAMI Park, home of the Melbourne Storm at 12.00pm where l was able to go in and look at their trophy cabinet before boarding the bus with the players to head to Sunbury. On the bus trip we were able to chat with the players who were very generous with their time and we all had a few laughs. We arrived at Sunbury and were treated to a BBQ lunch and the players were then involved in a clinic which l watched from the sidelines. Santa paid a visit for the younger children and l even scored a couple of lollies! Being a huge Melbourne Storm fan l had a great afternoon, got some good photos and loved the day. Jaison Barlow

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The Bendigo group enjoyed a Christmas picnic in the park.

Variety Christmas Party A group of heart children were treated to an extra special day out at the Melbourne Convention and Exhibition Centre on Thursday 12th December for the annual Variety Christmas Party. The staff and volunteers from Variety did an amazing job at making sure all of the children had a great day. Children were treated to live entertainment, carnival rides and many interactive activities including farm animals, marine animals, emergency services, fencing, arts and crafts and woodwork just to name a few. And nobody left hungry with lunch, snacks and treats all provided. It was great seeing everyone enjoying their day out and everywhere you looked children had smiles on their faces and staff had smiles too, knowing they had provided such a special day. The fun continued as we left with each child receiving a present from Santa to take home.


... Christmas Celebrations Our families celebrated Christmas this year at the Christmas Party for Special Children on a perfect Summer’s Day. The Nursery at Flemington Racecourse was transformed into a festive wonderland on 1st December. Guests enjoyed a three hour stage show featuring entertainment by Code One Police Band, He Dee Ho Children’s Performers, Humphrey B Bear, Santa, Busy Feet Special Needs Dancing Group, Australian Girls Choir, That Dog Dancing Guy, Hipnotic Beats belly dancers and drummers and Brittany Leo. The children enjoyed numerous rides and activities, lunch, ice creams and a present to take home. Our families met at the HeartKids marquee where they could purchase a ticket in our raffle and marvel at the spectacular Santa cupcake mosaic masterpiece created by the fabulous Cake Angels. The display featured 1050 cupcakes, not only did everyone enjoy looking at the display, the cakes were scrumptious and very popular. A big thank you to the following people who helped make the party a success: • The Christmas Party for Special Children • The staff of HeartKids Victoria, including Norm, Tracy, Bea, Margaret, Lynette, Sherrie, Amy, Sandra • Volunteers on the day HeartKids Staff and Karin Burgess, Lauren Trengove, Brian Mates, Nicole Cukierman Donations of goods: • RACV • Multi Direct • Pepsico • Ashdene • Luca family

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Transition Support Services at RCH What’s been happening in the Transition Support Service? The RCH Transition Support Service has been very busy recently working on lots of exciting projects. One of these projects is our new brochure called ‘Get Pumped! Your Continued Cardiology Care’ which was kindly sponsored by HeartKids. It includes practical information about the different adult cardiology services in Melbourne and helpful tips to assist young people and their families in preparing for transition to adult health care. Copies of this brochure can be accessed from Heartkids or downloaded from our website www.rch.org.au\transition. There are heaps of other great resources on our website too including our brochures on ‘Studying’, ‘Travelling’ and ‘Finding a Job’. Another exciting project we are developing is ‘Team of Life’ project which we will run at the RCH this year. We are collaborating closely with David Denborough from the Dulwich Centre in Adelaide, the RCH heart transplant team and the Alfred heart transplant teams. The ‘Team of Life’ uses a narrative therapy approach which has been used successfully in many different contexts around the world, including remote Australia as well as working with kids in Africa. The heart transplant ‘Team of Life’ event will bring together patients and families from the RCH and Alfred to enable them to share their stories with others who may have experienced similar journeys. The fun event is free and will be run on Sunday the 2nd of March from 10.00 to 2.00pm.

HeartKids have been generous in supporting this event too! Back in October we held the first young person’s clinic for Heart Transplant patients at The Alfred hospital. This clinic was a huge success, where young patients who are aged 18-25yr were able to attend clinic as a group. This was a great opportunity to get to meet other transplant recipients of a similar age or catch up with some familiar faces. The RCH heart transplant team and The Alfred heart transplant team both worked together to achieve a clinic which was suitable for young people and their families and the young person’s clinic will continue now twice a year. Please keep checking our blog for updates as there’s always something happening in the Transition Support Service! On behalf of the Transition Support Service team I hope you and your families had a lovely Festive Season and you experience a healthy 2014. Bec Peters Youth Mentor Transition Support Service Bec.peters@rch.org.au

Tw ee n Ca mp 20 13 Another Tween Camp has flown by again. Held at Camp Getawa y, Axedale, the camp saw a lot of new faces as well as a few that had returned. Even though we had a small group of 15, it felt like there were a lot more! The enthusiasm of tweens can be deafening! Friday night saw its usual mayhem of unsure children and a bus running behind schedule, but as soon as everyone arrived, food was served and the camp was underway. Our Friday night activity was creating personalised name badges. This was to help the supervisors keep track of names but also to ensure that our tweens could be easily identified when we were off-site the following day. Saturday saw a full day of activities. Our campers received their fantastic goodie bags. The fabulous Art Cabriolet team came on site and inspired the tweens to participate in an activity called “My Heart Says” where they decorated a personal memento for someone special in their lives. This proved to be a fabulous activity and a lot of budding artists were discovered. Lunch was hosted off site at Red Rooster in Bendigo by one of our HeartKids families (the proprietor). With so many of us, we seem to take over the place! Then it was off to Ten Pin Bowling. Many strikes & spares were taken on the lanes and everyone had a great time.

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To keep the energy levels up during the day, snacks between meals were donated by The Cake Angels and they were delicious! After such a full day I thought it would encourage our tweens to have a quiet afternoon & night, I was wrong! As soon as we returned back from our day of external activities, it was mini-golf for all. After dinner was a series of games, the favourite (a tween camper’s idea) was alien invasion! And then it was Sunday (already!) & all of a sudden everyone was going home, yoyos in hand. The last words from many campers were “see you next year,” which was very encouraging. As another Tween Camp came to an end we were already talking about Tween Camp 2014. Special thanks to The Shriners who contributed towards the cost of the camp. Thank you to all of the volunteers who came along to hang out with the campers. Without a team of supervisors (and a fabulous nurse), these events cannot happen! Erin Cervelli Camp Supervisor


Adults with CHD Recently the Cardiac Society of Australia and New Zealand made recommendations on the standard of care for Adults with CHD. The Cardiac Society of Australia and New Zealand

Adult Congenital Heart Disease (ACHD) Recommendations for Standards of Care Development of these guidelines by Prof David Celermajer, Drs Mugur Nicolae, Tim Hornung, Clare O’Donnell and members of the Paediatric and Congenital Council; Drs Robert Justo, Andrew Bullock, Michael Cheung, A/Prof Andrew Cochrane, Drs Tom Gentles, James Ramsay, A/Prof Gary Sholler and Dr Gavin Wheaton. No authors have any relevant Conflict of Interest to disclose. The guidelines were reviewed by the Continuing Education and Recertification Committee and ratified at the CSANZ Board meeting held on Tuesday, 6th August 2013.

SUMMARY • The Cardiac Society of Australia and New Zealand (CSANZ) recognises that adult congenital heart disease (ACHD) is a relatively new and rapidly growing area of need, for which appropriate planning is required to establish and maintain adequate standards of care. • There are likely now more adults (over 16 years) in Australia and New Zealand (ANZ) than children with CHD, and the numbers of ACHD patients are increasing annually, particularly those with complex disease. • Recent data have emphasised that (i) without adequate planning, “loss to follow up” rates in transition from paediatric to adult congenital heart services are over 50% and that (ii) mortality rates are substantially higher for young adults lost to follow up, compared to those under regular review at a dedicated ACHD centre. A recent publication has also documented a mortality benefit for those young adults with ACHD cared for in specialist centres, compared to those who are not (Wray et al, Heart 2013; 99: 485-90). • CSANZ wants to emphasise that a “whole of life” plan for the management of Congenital Heart Disease is appropriate, in which context the issues of excellence in paediatric cardiac services, excellence in adult CHD services and seamless transition of care arrangements should be available to patients with CHD across Australia and New Zealand. • The two key areas requiring attention are: i. Planning of Transition of Care from paediatric cardiac to adult CHD services. ii. Establishing and maintaining Comprehensive and Regional ACHD services to serve the population needs of ANZ. Guidelines addressing these two aspects are attached.

Transition of Care Arrangements for Adolescents / Young Adults with Congenital Heart Disease PREAMBLE Most children with Congenital Heart Disease are not “cured” by their paediatric interventions, rather many of them have residual haemodynamic and/or electrophysiologic abnormalities that require long term surveillance. Transition of care from the Paediatric Cardiology to the Adult Congenital Heart Disease (ACHD) environment is difficult and challenging. The transition occurs from a “trusted” team to an unknown team in a different environment.

International studies have suggested that even in the best models, up to 50% of children may not successfully transition and may be lost to long term follow up, with potentially catastrophic consequences for their health. Well established ACHD units have the capacity to cater for not just their cardiac needs but ancillary medical needs, such as anaesthetic and/ or obstetric support where necessary, and their psychosocial and non-medical needs also. SUGGESTED GUIDELINES CSANZ believes that transition is best done by a close working relationship between the Paediatric Cardiac Team and the ACHD centre or specialist, with some responsibilities accruing to these entities, as well as some responsibilities belonging to the patient and family. CSANZ wishes to encourage a “whole of life” approach with a continuum of care. Transition should be from a paediatric cardiologist or paediatric cardiac service to a specific ACHD Specialist or to a recognised ACHD centre. 1. We recommend that each major Paediatric Cardiac Unit employ a Transition Nurse or health professional, at least 50% FTE, to oversee and ensure effective transition arrangements, at an individual patient level. The effectiveness of Transition to ACHD care should be a Key Performance Indicator for the Paediatric Cardiac Unit. In general, the Paediatric Cardiac Team should raise the concept of transition of care at an appointment in early teenage years; and should provide the patient and their family with a paper or electronic copy of their final clinical evaluation and any relevant diagnostic tests (e.g. CXR, ECG, echocardiogram and/or exercise test, other forms of imaging). This “information pack” should also include ideally a copy of the actual operation reports from significant heart surgeries. Where the local ACHD centre has an Information Brochure, they should be provided to patients and their families. 2. The plan for transition should be communicated to the patient’s normal GP. 3. The Paediatric Cardiac Team should clarify that the patient will continue to receive medical support from the Paediatric Cardiac Team until the patient has met the ACHD specialist/team for the first time. 4. The ACHD specialist or centre to whom the patient is referred should make appointments for the patients of the Paediatric Cardiologists when requested, including providing contact details for each patient to use during the time of transition; and to notify the Paediatric Cardiologist when the transition documentation has been received. 5. This service should attempt to make a reminder call to each transitioning patient in the week prior to their scheduled appointment and to have a mechanism to follow them up should they fail to attend.

Centres for Adults with Congenital Heart Disease Across Australia and New Zealand there should be: a) A Comprehensive Adult Congenital Heart

(CACH) Service in those regions serving populations of ≥ 2-3 million people. Where the population served is over 5 million people, consideration should be given to 2 CACH services; depending on local factors and geographies. b) A Regional Adult Congenital Heart (RACH) Service for regions which are at a substantial distance from a CACH service. c) If possible, CACH and RACH centres should develop an Information Brochure explaining their location, staff, contact details and purpose of follow up, for Paediatric Cardiac Units to distribute as part of easing the concerns of patients and families around the Transition process.

Comprehensive Adult Congenital Heart Centres (CACH) should have established links

to the regional Paediatric Cardiac centres. They should hold regular Multidisciplinary Case Conferences, to optimise decision making. CACH centres should comprise: a) At least 2 ACHD specialists, who are adult FRACP cardiologists who have spent at least 12 months of training in dedicated paediatric or adult congenital cardiology units; or paediatric cardiologists with specific experience in ACHD (acknowledging that no formal accreditation system for ACHD specialisation currently exists). b) At least 2 ACHD surgeons, who are FRACSqualified paediatric cardiac surgeons with specific experience in ACHD. c) Access to the following services: i. Cardiac MRI and a cardiologist or radiologist experienced in ACHD. ii. Electrophysiology services with at least one EP specialist with ACHD expertise. iii. An interventionist with experience in treatment of ACHD. iv. An Intensive Care Unit with adequate capability for peri-procedural support. v. A high risk/medical Obstetrics Unit that supports ACHD patients. vi. A heart and heart/lung transplant program, in the same city. d) A Clinical Nurse Coordinator and a Nurse Educator. e) Access to Clinical Psychology, Genetic Counselling and Social Work support services.

Regional Adult Congenital Heart Services

should have at least one ACHD cardiologist, as defined above; a Clinical Nurse Coordinator (at least part time); and established links to a CACH service. Every young adult with repaired CHD should be seen at least once in an ACHD specialist centre, except those who have been discharged from follow up by their paediatric cardiologist. Every young adult with unrepaired CHD should be seen regularly at an ACHD facility. Every adult with non-simple CHD (where simple CHD is small or repaired ASD, VSD or PDA without residual haemodynamic abnormality; or mild pulmonary or aortic valve disease) should be seen regularly at an ACHD centre, with or without shared care by community-based specialists.

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Meet My Fighter, Hannah Meet my fighter, Hannah, she is 16 months old and had her latest surgery at The Royal Children’s Hospital in December. Hannah has several heart defects including: CCTGA, large VSD, Pulmonary Artesia, heart disease av+va discordant connections, MAPCAS, and AV Regurgitation. This means Hannah has a unique and complicated heart. Hannah also has two chromosomal variations called deletions which means small parts of two chromosomes did not form completely. She also has a gastrostomy peg for feeding. We are from country South Australia and I am a single mum. Hannah has three brothers: Luke 8, Alex and Kaleb 5, are twins. She also has a big sister, Callee-Anne who passed away from SIDS at 5 months old. When I was pregnant with Hannah I was unaware that anything was wrong with her. Due to losing Callee I had a very anxious pregnancy and was so scared of possibilities with losing Hannah in the same way which resulted in her premature birth at 38 weeks. When she was 6 days old, our paediatrician came in and had a look at Hannah and observed that she was not feeding, that she was grey/blue and losing a lot of weight. He knew straight away by listening to her heart that there were some issues which resulted in us being flown to Adelaide straight away. Hannah was put in ICU that night, which was scary as I was informed that she probably wouldn’t survive the night. My entire fear of SIDS changed and I started focusing on her heart and doing what it took to make her feel the strength from me to get through the stages of her life. Hannah has shown me and medical staff to be the strongest amazing little girl I have ever set my eyes on: she has drawn her strength from everyone around her. She pushes for everything she wants and is so determined to prove to everyone she’s going to do wonders with all of her little speed bumps. I started praying from the first night she was taken into ICU where we spent the next 6 weeks in the Women’s and Children’s Hospital (WCH), until Hannah reached 2.6 kg, however this was still a bumpy ride in and out of ICU. Hannah and I were flown to The Royal Children’s Hospital (RCH) in Melbourne for her first operation where she had a 3mm BT shunt and ligated MAPCAS done. The plan from there was to feed her, keep her happy and

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get her to gain weight. When Hannah was 20 weeks old we were finally able to go home for the first time which was amazing. I hadn’t seen my other boys who were with my mum back home and she did an amazing job looking after them and supporting us so I was able to focus on Hannah. Tracy and Sherrie at HeartKids Victoria were and have continued to be my angels in Melbourne and have helped us with each operation Hannah has had. Their morning teas, advice and support have been priceless. Hannah had a second operation at 7 months to upgrade the shunt to 5mm. Now she has just had her 3rd and big operation, lasting just over 10hrs where they did a VSD closure, reconstruction of pulmonary artery with the left ventricle to pulmonary artery conduit and re-did the shunt. The surgeon commented she ‘tolerated the procedure very well’ – very pleasing for me to hear. Hannah will have more operations as she gets older. Learning about how to look after Hannah has been one of the scariest but exciting things I have ever had to do in my life. Learning as much about the heart as I have has been a steep learning curve, including learning about her medications, feeding peg, and how to change it and look after it, learning about MET calls and hospital life, and meeting different staff daily. It has been an amazing journey, so one day I will be able to share this all with her and show her how amazing she is. She is my inspiration that no matter what life hands you there is glory and power that comes out the other side. She’s a very lucky girl to have her big sister with her, watching her, helping her pull through each stage of her life. This third operation was difficult because we were in Melbourne for Christmas and New Year, and away from my other children. We can’t wait to return home to be with the boys and start living as a family again I don’t think as a mother I would have been able to get through any of this without the love, support and help from all my heart mums, and my mum Michelle, Jade, Nicole, Tracy, Sherrie, Deb and Rach, and all of the nurses and doctors. Thank you, thank you for all your support. PS – thanks to Paul from HeartKids Hobart for helping me to write and edit this article. Written by Hannah’s mum, Essie Waye


Hospital Happenings Australian College of Massage

Premiership Cup

Our families thoroughly enjoyed a visit by the students from the Australian College of Massage at a morning tea in November. They were treated to seated massages which provided some much-needed respite and relaxation. A HUGE thank you to the students and we hope they can attend again soon!

Halloween We decorated Koala ward and distributed treats to help our patients, families and staff enjoy Halloween on 31st October.

Christmas Celebrations at RCH

Tracy & Sherrie pictured with the Starlight Captains and Hawthorn Football Club mascot Hawka who brought the Premiership Cup into the RCH Starlight Room.

Mike Brady Mike Brady of “Up there Cazaly� fame dropped into a morning tea at RCH to meet some of our families.

Nurse of the Month Award HeartKids sponsors the Nurse of the Month Award which recognises the work of our wonderful Koala ward nurses. Congratulations to these nurses recently awarded Nurse of the Month: October - Anna Barbaro; November - Dianne Sili; December - Sarah Howes.

RCH Morning Teas All ward, ICU and outpatient families are welcome to join us for morning tea, held on Tuesdays and Thursdays from 10:30am - 12:00pm in the Parent Lounge on the 3rd Floor. We look forward to seeing you there!

IN HOSPITAL

Clockwise from top left: Christmas Eve Morning Tea; Tracy & Hannah; Christmas lunch icecream cake; Gifts for Rosella and Koala staff; Christmas hamper contents; Hamper distribution on Christmas Eve; Cupcakes for families; Christmas lollies.

A special hello and our very best wishes to all the heart children who have been in hospital in the last three months. 11


Fontan for Life During October and November the Murdoch Children’s Research Institute held their Fontan for Life campaign to raise funds for the vital work of the Fontan Registry. The Fontan Registry is a heart database created in 2010, when 16 research centres and hospitals around Australia and New Zealand came together to compile all the health information of Fontan heart patients. It is the largest database of its kind in the world and includes over 900 heart patients ranging from one to 61 years old. The database was created to provide researchers and doctors with information to help improve treatment options and long-term health outcomes for heart patients. The ‘Fontan’ procedure is a lifesaving medical technique used to treat children born with certain serious heart defects. There are over 1300 people in Australia and New Zealand who are alive today due to the Fontan procedure. Already the registry is seeing results; new research has found that doomsayers, who said the Fontan operation would last less than 20 years, have been proven wrong. In the largest follow up study of its kind, and the only one based on entire populations, researchers found the best possible results in terms of survival for this group of heart patients. “We are now proving that the vast majority of these patients will survive for three decades,” said Murdoch Childrens A/Professor and heart surgeon Yves d’Udekem, “it is therefore likely a lot of these patients will see their fourth and even fifth decade post surgery.” Further research from the registry has found that the Fontan population is increasing rapidly. Whilst this used to be a rare procedure, the population will continue to grow and in 30 years will grow to over 3,000 patients in Australia - which is the same number of kids with cystic fibrosis- a disease everyone has heard of.

Yves says that the registry is already improving the care of patients, but wants to be able to tell his patients what kind of life they can expect, what effects the procedure might have on their heart, lungs, kidneys, liver, brain, even careers and family prospects. Pilot data from the Registry has found one in three patients stop seeing their specialist cardiologist once they become adults. This is a huge problem, because potential problems get missed until it’s too late to do anything. A pilot study that is screening patients for liver and kidney failure has found problems in half the patients, mostly with no symptoms. The money raised from the ‘Fontan for Life’ campaign will help fund a number of crucial projects, including the abovementioned pilot study that will investigate the liver and kidney function of patients who have undergone the Fontan procedure. The project is important in determining how these two major organs tolerate the higher vein pressures generated after Fontan surgery and findings from this research will ultimately improve the care that Fontan patients receive. The funds raised will also support a fertility and childbearing study. It is recognised that pregnancy is high risk for women with a Fontan. The study aims to collect data regarding fertility, pregnancy advice and complications, as well as delivery and outcomes for Fontan mothers and their babies. In the future the registry will also be utilised to initiate large scale trials for potential new medications and treatments. To find out more about the registry visit www.fontanregistry.com

Our thanks to MCRI Communications for providing this article.

Farewell Jim Wilkinson Many of the speakers honouring Jim Wilkinson said they found him to be kind and very friendly, a team leader who brings out the best in other team members, a mentor and collaborator.

A ‘This Is Your Life’ afternoon was held at the RCH on 19th July 2013 to farewell Professor Wilkinson on the occasion of his retirement. Many of his colleagues, both former and more recent, spoke about their experiences working with him at The Royal Children’s Hospital since 1988.

His successor in the role of Director of Cardiology, Professor Dan Penny, said that ‘Jim Wilkinson has had a great impact globally; he is a supreme They recalled that he was recruited by teacher and a wonderful clinician. He his predecessor Dr Alex Venables, and has literally changed the world for that he came from Alder Hey Hospital children with heart disease and for his in Liverpool where he had been Head Professor Jim Wilkinson with some of HeartKids’ students.‘ of Cardiology. Past-Presidents (L to R): Carol Bosward, Margaret

HeartKids was represented at the As Dr Wilkinson, he was Director of Agetzis, Margaret Patullo, Alison Byrne farewell function by four of the Past Cardiology at the RCH from 1988-2001 Presidents who knew him well from liaising through HeartKids. and in that time, he developed both the cardio-pulmonary transplantation service and interventional cardiology. In HeartKids Founding President, Carol Bosward, contacted Dr conjunction with Dr David Hunt at the Royal Melbourne Wilkinson in 1990 to introduce the newly formed organisation. Hospital, Dr Wilkinson established an Adult Congenital Heart Over the years since, Dr Wilkinson has provided guidance and service for patients moving on from the Children’s Hospital. valuable assistance to our organisation in a variety of ways, for Now Professor Wilkinson, he has been involved with training many current and future cardiologists; in fact many of his former students are now working all around the world. In pursuing his interests he has had hundreds of published research articles and has written many book chapters.

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example, as a patron, medical adviser, guest speaker at events and chairperson at formal meetings. In 1998 Dr Wilkinson collaborated with HeartKids in the production of the booklet ‘Children with Heart Conditions’ - a valuable resource for parents of cardiac children, which is still in use today. Farewell Prof Wilkinson, our best wishes for your future endeavours.


MonashHeart News Welcome Dr Bennett Sheridan MonashHeart warmly welcomes paediatric cardiologist Dr Bennett Sheridan as a permanent member of senior medical staff. Many will already know Dr Sheridan as he has covered paediatric cardiology services as a locum at MonashHeart for the last 12 months. He is also well known at The Royal Children’s Hospital where he has worked as a consultant cardiologist, and where he has been completing extensive subspecialty training in paediatric anesthesia and intensive care. Dr Sheridan’s skills, knowledge and experience are a wonderful addition to the MonashHeart team at Monash Health.

HeartKids Donation

Dr Bennett Sheridan

Last month we were delighted to receive a cheque for $30,000 from HeartKids Victoria. The funding was a result of the support of Biggin & Scott Real Estate, who donated the commission from the sale of Madi and Jarrod’s (2013) ‘The Block’ apartment to HeartKids. CEO of HeartKids Mr Norman Hutton and Biggin & Scott CEO Mr Paul Stoner presented the cheque to MonashHeart and we are very grateful for their support. We intend to purchase two paediatric echocardiogram transducers for our MonashHeart Dandenong paediatric service with this generous funding.

eart

Support at MonashH

Coordinator Our Family Support its the clinic on Sherrie McDonald vis - 4.00pm Wednesdays 1.00pm c, Special Medicine Monash Children’s Clini och House) Centre (next to McCull ton 246 Clayton Road, Clay L to R: Russell Cambridge, Norm Hutton, Assoc Prof Sarah Hope, Prof Ian Meredith, Phil Riggio, Sherrie McDonald, Paul Stoner

BIG4 Deni Holiday Park When the BIG4 holiday park in Deniliquin ran a Facebook competition recently to win the entire park for a group for a weekend, there was no question which group I would nominate....HeartKids! I was excited when I heard that I had won and I contacted Tracy at HeartKids to organise families to attend the event. The weekend came around quickly and we soon had 20+ families being warmly greeted by the lovely staff upon arriving at the Deniliquin BIG4 holiday park. Not only did the park have some great onsite things for the kids to do, such as the giant jumping pillow, water park, 2 pools and a basketball/tennis court, but the amazing BIG4 team had also arranged bacon & egg and pancake breakfasts, a BBQ lunch, a river cruise, activities for the kids such as plaster painting, sand art, face painting and nightly movies. The parents weren’t forgotten either - with some twilight musical entertainment on the river bank by Michael Gorham on the Saturday evening. It was a great weekend away, with old friendships being rekindled and new friendships formed. All the kids got along wonderfully and it was comforting knowing that the kids could explore the park and there would always be another heartkid family nearby looking out for them. On behalf of all the families that attended, I’d like to say a huge thank you to BIG4 Deniliquin Holiday Park’s owners Frank and Lynda White, along with their business partners Bruce and Glenys Catto and the amazing staff at the holiday park for their support over the weekend. Special thanks to Joanne Arrowsmith for being our paparazzi for the weekend! I hope everyone had a great time, I know my kids did. Written by Chrys McLean http://deniliquin-paringa-holiday-park.nsw.BIG4.com.au/

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Support Matters

As we ushered in the New Year we reflected on 2013 – a busy year where we met many inspirational heart children and families who amaze us with their strength and courage. Sadly we said goodbye to too many children - our heart angels and their families are always in our thoughts. We would like to acknowledge the amazing medical teams that look after our children. To the nurses, doctors, cardiologists, surgeons, anaesthetists, perfusionists, physios, play therapists, dieticians, teachers, technicians, chaplains, pathology team, researchers, social workers, PSAs, ward clerks, admin staff - from the bottom of our hearts, thank you for everything you do. The formation of a new Committee to assist with the development of our support services will ensure that organisational goals are achieved and a high level of support is provided across Victoria and Tasmania. We need to grow and change to better meet the needs of those affected by CHD to provide support through every step of the journey – from diagnosis, through childhood, the teenage years and transitioning to adult services. We are looking for ways to better assist our families and expand our support offerings and we look forward to sharing developments with you over the course of the year. An exciting time for children is the start of the school year but it can also be a difficult period for some of our heart children and their parents. Please read our article on page 22 about School Starters for some handy hints and please don’t hesitate to contact us if we can assist. Privacy Laws prevent us from viewing the patient lists in hospitals. If you would like one of our team to visit you, please advise the ward clerk and/or nurse or send us a message either via email or text message. You can also write “HeartKids visit requested” on the whiteboard in your child’s room in Koala ward. Happy New Year to you all! We look forward to providing ongoing care and support in 2014. The Family Support Team

HeartKids Australia News

I hope that you all enjoyed a very Merry Christmas and a Happy New Year. I would like to take this opportunity to thank our sponsors including HCF, RFG, Wilson’s HTM and Kiwanis for their invaluable support during the last year and I would like to welcome our newest sponsors Woolworths, Amway and IKEA. We are looking forward to working with them throughout the year ahead. I would also like to introduce the newest member of the HKA team, Samara Smith. Samara is managing the National Corporate Sponsorship role while Fiona Glenn is on family leave. Congratulations to Fiona, on the safe arrival of darling daughter “Amy”. Samara has a background in sponsorship and events with not for profit organisations. Our team is very much looking forward to Teen Camp 2014. This year the camp is being held from January 17 -20, at Lutanda in the stunning surrounds of the Blue Mountains of NSW. Luckily, the campsite escaped any damage in the recent bushfires! This is a much anticipated event each year and a fabulous program has been arranged The beautiful Blue for the teenagers who are travelling Mountains, NSW from across Australia. With three nights and four days of adventure and activities, the campers will have the opportunity to meet other teens affected by CHD and their siblings from around Australia and share their experiences with each other. I would like to express my appreciation to the organising team, and, in particular to the many volunteers who freely give of their time to ensure that the campers have a great (and safe) experience. In February, the HeartKids teams in each state will be “taking it to the streets” to raise awareness and funds by selling merchandise on Valentine’s Day which is also “International Congenital Heart Disease Day”. Get ready to “Be a Sweetheart” and help raise awareness of HeartKids and our work! Watch our website for details of the February activities which will include the presentation of our Grants-in-Aid research awards (two projects will be conducted in Melbourne) and some very exciting initiatives involving IKEA! Kind regards, Jann Jann Kingston CEO, HeartKids Australia

In memory of Ollie

Diana and Domenic Caruso, owners of St Rose Café in Essendon, held a fundraiser on Saturday 14 December to mark the first anniversary of the death of their cousin Ollie. Ollie underwent four open-heart surgeries before he died aged five months. A dollar from every coffee purchased and all proceeds from cake sales were donated to HeartKids. The café was decorated with HeartKids balloons and posters and the sweets cart was full of very tempting cakes. It was a successful day with everyone enjoying their coffees and delicious baked goodies. Diana and Domenic were thrilled to raise $1700 in memory of Ollie. Pictured right are Diana and Domenic Caruso, Ollie’s aunts Michelle and Trish Caruso with ex AFL footballer Simon Madden, HK Treasurer Joseph Eid and family, Tracy Stanley & her daughter.

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Reflections In loving memory of Rowan Seward 07.10.1994 - 25.07.2013 d, The Angels saw you getting tire a cure was not to be. you They wrapped their wings around ” me. and whispered “Come with ce, silen in h You suffered muc but your spirit did not bend. , You faced your pain with courage until the very end. You tried so hard to stay with us, but this fight was not in vain. them The Angels took you home with . pain the and freed you from Jodie, Fiona & Gavin

In loving memory of Jacob Angus Holden Born 5/11/2001 Died 11/08/2013

Heart Angel Remembrance We remember these Heart Angels whose birth date or anniversary is in the Summer months.

Birth Dates Paul Livingstone 2nd December 1981 Jamie Ekberg 19th December 2005 Kristiana Thomaidis 20th December 2004 James Kelleher 21st December 1991 Lucas Stone 23rd December 2009 Jonathan McGrath 29th December 2007 Olivia Leishman-Nasserallah 2nd January 2013 Ethan Hanley 16th January 2002 Ethan Caruana 17th January 2003 Angus Puszkar 25th January 2013 Heidi Hansen 30th January 2007 Blake Gordon-Cooke 4th February 2012 Amy Dawson 11th February 2010 Hope West 12th February 2013 Andrew Lillis 13th February 2004 Eve Higgins 15th February 2013 Phoebe Rolando 20th February 2009 Max Barker 21st February 2008 Stephen Buckman 26th February 1991

Anniversary Dates

Who was Jacob?

ughts on who Jacob here with different tho There are many people o I think he is. I would like to share wh is or what he was, but to cheer. A friendly e who that we all used Jacob was a friendly fac humble person full of that was always near. A smile without disgrace you, so dearly. e. Jacob, how we miss grace that was full of gle re by my side. An moment when you we There was never a dull e an eye for eye. There brother who would giv amazing friend and a l never forget. Jacob h you around that I wil were many moments wit ret no reg s. was a person that had hting through the ough thick and thin. Fig Jacob was a fighter, thr u were an amazing t have won. Jacob, yo battles that he might no r ew, brothe and son. grandson, cousin, neph that I choose to d memories in my head With all the thoughts an t you that will ab that I remember ou re the in ny ma are re think, the hands, there are ur smile and your tiny all link. Everything to yo rth a damn. wo be u that will always some things about yo re things because, there is still mo on en list t bu ish fin to It is time nk about you I applaud. Whenever I thi can we t tha ob Jac t abou u were one of the cry because Jacob, yo to rt sta d an n ow akd bre best things in my life. brother, Lachie b’s funeral by his big co Ja at d rea d an en Writt

Jesse Cotter 1st December 2008 Jackson Walsh 28th December 2009 Frank DeSensi 29th December 2009 Oscar Batrouney 30th December 2009 Arlo Donnelly 30th December 2012 Matthew Moran 15th January 2005 Angus Puszkar 25th January 2013 Daniel Kabrovski 26th January 2013 Heidi Hansen 30th January 2007 Lucas Stone 31st January 2010 Olivia Leishman-Nasserallah 3rd February 2013 Ethan Caruana 14th February 2003 Georgia Morrison 17th February 2000 Andrew Lillis 19th February 2004 Mary O’Keefe 22nd February 2006 Kristiana Thomaidis 28th February 2009

Thinking of You

Our thoughts and prayers are with the families and friends of all Heart Angels in their time of loss.

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Kiwanis Sponsored... Box Hill Train Day - 12th October

With the sun out on a beautiful Spring day, many children started this event by playing in the local playground. Families then gathered in a private area in the middle of the miniature train park and were treated to train rides around the lovely landscaped gardens. They enjoyed a scrumptious sausage sizzle lunch while they watched Marco the Magnificent perform his magic tricks and delight the children by presenting them with balloon sculptures. Special thanks to The Kiwanis Club of Waverley (particularly Brian Mates) for coordinating this event, to the Box Hill Miniature Train Society for allowing us to use their venue and provide free train rides and to Marco the Magnificent for volunteering his services.

Myuna Farm Outing - 27th October Courtesy of The Kiwanis Club of Sunbury, a number of our families met at Myuna Farm for another fun day out. As they arrived, they were greeted by the friendly Kiwanis volunteers, given name tags and tickets for free rides on the pony and train. Many children headed straight to the baby animal enclosure to cuddle the guinea pigs and rabbits and play with the friendly goats. The goats loved to chew the special name tags given out to our families! The children enjoyed using the playground and a walk around the farm to visit many other farm animals. The pony rides and train rides were a favourite activity for everyone. The Pass the Parcel team created a special atmosphere by artistically decorating the faces of our children and also delighted the children with special balloon sculptures. Marco the Magnificent captured the interest of many children while conducting his magic and put on a show with the help of his young daughter. Overall the day was a great success. We thank the Kiwanis Club of Sunbury for sponsoring and coordinating this event and Myuna Farm management for allowing our families to have a fun day out at their venue.

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...Family Activities Kiwanis is an international community service organization of volunteers comprising over 232,000 adult members in over 8,300 clubs worldwide. About 14 years ago, the Kiwanis clubs in Australia (there are about 50) adopted HeartKids as their primary national focus. The Kiwanis motto “Serving the Children of the World,” sums up what Kiwanis is all about and demonstrates why the HeartKids cause was seen as one which Kiwanis should embrace. Kiwanis clubs in Victoria (there are none in Tasmania, yet!) organize activities specifically for HeartKids families and support the cardiac

units at both The Royal Children’s Hospital and Monash Medical Centre by providing toys and various support items, helping to refurbish/enhance the physical surroundings and funding equipment purchases. In addition to this support at a local level, Kiwanis has, over the last 8 years, donated around $300,000 to HeartKids Australia specifically for research. The HeartKids/Kiwanis relationship continues to grow and strengthen and we have recently seen some HeartKids members and employees join Kiwanis clubs.

Candlebark Farm Family Camp

HeartKids families were treated to a fun weekend at our annual family camp in Healesville on the weekend of 20th to 22nd September. The weather was perfect which made it possible for our families to enjoy all the outside activities such as Super Swooper, Flying Fox, Low Ropes course and canoeing. Also popular were our indoor activities, including a special Art activity run by The Art Cabriolet, rock climbing, basketball, table tennis, child care activities and games in the hall. Parents enjoyed a dinner out at the local hotel, while children were entertained in the child care room. We really want to express our gratitude to the clubs of Kiwanis Division 6 who generously fund our camp and we say a special thank you to Bruce Entwisle for his leadership as camp coordinator.

A special thanks to all who contributed to the organisation of the camp: • The Camp Committee/camp volunteers: Bruce, Brian, Shirley, Natasha, Margaret, Lynette (Kiwanis & HeartKids representatives) • Camp Volunteers: Cameron, Jane, Tess, Nerissa, Shannon, Jenna, Julie, Sarah • Kiwanis club members • Candlebark Farm manager, Michael Hill • The Cake Angels • The Art Cabriolet • SES and CFA • Camp Sponsors: the clubs of Kiwanis Division 6; Bendigo Bank - Carlton Branch; SafeonSite.

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Congratulations! 

Branch News

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New Babies

Congratulations and our very best wishes to all these families who have welcomed new babies in recent months.

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Matt & Julia Charlton have proudly announced the birth of  their daughter, HK Emily, on 3rd August 2013.  Kanishka Wijesinghe & Jenendra Gunawardana have announced the arrival of their baby daughter, HK Arya, born 12th September 2013.

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 Stewart & Esther Pither have welcomed their new baby, HK Harvey, on 9th November. He is a little brother to Oscar.  Chris and Anna Batrouney have welcomed a baby daughter, Charlotte, who was born on 29th November 2013. A little sister for heart angel Oscar, and Thomas.

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HK Melanie Morris and Paul are thrilled to announce the arrival of their precious daughter Kaitlyn Jayde Morris on  6th December 2013 at Frances Perry House, Parkville. The McGough family have announced the arrival of their new baby girl, HK Abigail, on 13th December.

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In each edition of the newsletter we like to welcome any   new babies who were born in the last three months.  If you have a new addition to your family (heart child or  sibling) and would like the baby’s birth announced in the  newsletter, please send us the details.

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Geelong News

 In August I held a cupcake fundraiser at Grovedale

Daniel & Christie Lyons announced the arrival of their son  HK Nate, born on 7th October. He is a brother to Brendon.  Peter & Jodi Robinson have a new addition to their family,  HK Faith, who was born on 14th October 2013. She is a  baby sister to Beau and Ella. 

HeartKids has a number of Branches around Victoria and Tasmania. You are welcome to contact your local Branch Coordinator to introduce yourself so the Coordinator can keep you informed about activities in your area. Please see contact details on the back page of this magazine and watch the branch news on our website: http://heartkidsvic.tas.org.au/our/support/Branch Network or follow us on Facebook for event dates.

West Primary School raising $237.70. Parents, teachers and a few HeartKids’ families enjoyed a morning tea with treats kindly supplied by Brumby’s Bakeries Geelong. ‘Patch the Brave Heart Lion’ book was read to the students and Patch donated some goodies for them! The aim of the morning tea was for the school community to fundraise for a defibrillator. The Grovedale Kindergarten has since purchased a defibrillator to be shared between the school and the kinder. I also talked with the kinder kids about HeartKids and the `Patch’ book was a hit again. In September, I spoke with my daughter Ellie’s class at Leopold Primary School. The kids were very interested to hear what it is like to be a `Heart Kid’. They were treated to some Brumby’s merchandise, pictured at left.

At the HeartKids Sky Dive in October my family and friends ran the BBQ. Brumby’s Bakeries Geelong donated the bread and there were also donations from Safeway Newcomb. My stepdaughter Brittany was one of the sky divers on the day raising $1315 for HeartKids. We have had some lovely morning teas in the last few months and it has been wonderful to welcome new families to the group. Thank you to our HeartKids’ families and for all the community support throughout the year. Libby Gibson, Geelong Branch Coordinator

FunFlight 2013 Across Victoria and in Hobart, Tasmania, a number of aero clubs hosted a fun day out for our families on the 10th November. The highlight of the day was a free fun flight. Many small planes took to the skies to show our families the joy of flying. The smiles on the faces of the children and adults after the flight were just priceless. Many of the aero clubs also had extra child-friendly activities which added to the excitement. We appreciate the generosity of the various aero clubs that donated the use of the planes, fuel and pilots and of all who were involved in providing extra entertainment and lunch. HeartKids would like to thank the committee of FunFlight and the coordinator, Amy Emmett, for offering our families the opportunity to be involved in this event. Comments from families included:   We can not thank you all enough for the amazing opportunity to be involved on this special day. The kids loved it.  Thanks so much FunFlight for taking us on a flight. The kids loved that the pilot could take us to see our house and some familiar landmarks. Great day out for all of us! Our son’s life is dominated by being unwell, missing out on normal kid stuff and being at the hospital often. This was something he really looked forward to, so thank you so much!  Saying thank you will never be enough - if only you saw the grin on his face for the whole day. God bless everyone for their thoughtfulness and generosity in hosting this event. All the kids and their families will attest that we forgot what our kids endure during the time spent at the event.  Thanks so much for giving us the opportunity to go on the fun flight on the weekend. The kids really loved it - I was hanging on tight! It was a lovely thing for us to do as a family.

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Tasmania News Save the Date: Tasmania HeartKids Car & Bike Show

Date: Sunday 2nd February 2014 Venue: Josef Chromy Wines, Relbia Road, Relbia TAS Entry: $5, children under 16 free

The Channel Charity Cheese Chuck

Along with a number of other Tasmanian charities, HeartKids was invited to participate in the Channel Charity Cheese Chuck at Grandvewe Cheesery at Birch’s Bay in Southern Tasmania on Saturday 23rd November. In the style of our English forebears, the public were invited to roll whole cheese wheels down a muddy hill after a donation was made to the charity of their choice! Unfortunately, the weather was quite poor and therefore the turn out for this event was not as great as anticipated, but a lot of fun was had by those in attendance. Thanks must go to Grandvewe Cheesery for inviting us to their inaugural cheese rolling event.

Devonport Trikids event, supporting HeartKids Tasmania Date: Sunday 2nd March 2014 Please check the website for more details.

Tasmanian Police Charity Trust Bike Ride The annual Tasmanian Police Charity Trust Bike Ride was recently held over three days from 22nd-24th November. Approximately 80 riders took on the extremely brave and arduous challenge of riding from Cradle Mountain in Tasmania’s central highlands, down through the rugged West Coast of Tasmania and culminating in Hobart. The weather was quite poor for much of the journey, but spirits were high when the riders arrived at the Tasmania Police Marine Headquarters in Hobart on the Sunday for a well earned BBQ and rest. The Tasmanian Police Charity Trust traditionally use the ride as a platform to fundraise for two Tasmanian charities per year, and HeartKids is extremely grateful to be recipients of a cheque for $20 000 this year. A huge thank you must go to all the riders and support crew, as well as to both Richard Douglas, the organiser of the event, and heart child Dad, Darryn Pugh, who rode in the event and is a great ambassador for HeartKids.

Devonport Our Devonport group held a Sausage Sizzle on Sunday 15th December at the new K&D Warehouse in Devonport raising over $500.

Claire Gluyas from HeartKids Devonport receiving the donation from Richard Douglas, organiser of the bike ride

Happy Birthday!

A very ‘Happy Birthda y’ to all the heart children and their fam ily members celebrating birthdays during Summer! 19


Heartfelt Thanks.... Sky Diving In October some very brave (or crazy) people jumped out of a perfectly safe plane at Skydive the Beach and Beyond, Great Ocean Road, Barwon Heads to raise funds for HeartKids. We extend a special thank you to Libby Gibson, assisted by her family and friends for feeding everyone on the day. Due to the inclement weather the scheduled jumps were running hours behind time but eventually they were able to jump from 14,000 feet. Our skydivers Bianca Quinane, Stephen Howell, Cameron Mates, Brittany Gibson, Jodi Templar, Sherrie McDonald, Nikki McCrone, Vasso Koletis, Clint Hodson, Matthew Gaunson, Scott Megens and Terry Hopkins all enjoyed their experience and we’re very proud of their bravery, support of HeartKids and fantastic fundraising efforts raising over $25,000!

Broadmeadows Car & Bike Show

When our son Julian was 3 months old he was diagnosed with a Heart Condition called Tetrology of Fallot. It was not the news we were expecting as we had two older healthy children. HeartKids put us in contact with another family whose child had the same heart condition. It was reassuring to know that we were able to talk to this family and know that there was going to be a good outcome for Julian. Julian had his surgery on 1st September 2007. Whilst in hospital we found it quite helpful attending morning teas that were organised by HeartKids. We were also able to see how the HeartKids’ staff were there to support families struggling to cope with their child going through surgery. This is what prompted us to want to help HeartKids help others. We decided to get a few fundraiser. friends and family members together and organise a Car & Bike show 0. 2013 was our 5th year and we have now raised approximately We ran our first Car & Bike Show in 2009 raising approximately $7000.0 ses look forward $56,000.00 for HeartKids. This is an event family, friends and local busines that see to e pleasur to and it gives us great together we are able to support a great cause. We look forward to doing another fundraiser next year. Julian is now 6 years old and attending Prep as well as various outdoor activities. He will need further surgery in the future to replace his valve but for now, he is doing great. We are so lucky to have a delightful child in our lives. Luisa and Adam Michielin

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....for Your Efforts! City2Sea The City to Sea is an event that we now look forward to each year in memory of our precious little Heart Angel Asha Louise McNamara. Asha was born 16th May 2011 and although she did everything within her power to stay with us she sadly passed away 9th September 2011. We miss Asha more and more with every day that goes by, and feel so blessed to have had the time with her that we did. Our family’s journey over this time introduced us to the wonderful work of HeartKids Victoria. We feel it’s only fitting that as we walk or run in her memory, we also raise money and awareness for such a worthy charity. I am very pleased to say that $1,660 was raised by Team Asha this year. Hayley McNamara

Cuppa for HeartKids Our Cuppa for HeartKids campaign during August and September was successful with 40 events being held, raising over $14,000 to date for HeartKids Victoria/Tasmania. The events raise community awareness about childhood heart disease as well as providing much-needed funds. We would like to thank everyone who participated in this year’s Cuppa for HeartKids campaign.

Bike Challenge On 5 th October Jay Coady and his team undertook a 24 hour stationary bike ride at Burwood Shopping Centre. We’d like to extend a huge thank you to all the riders and support crew for raising $7500.

Special congratulations to Dyonne Rhodes of Daysdale - the Cuppa host who raised the most funds for HeartKids nationally this year. Dyonne, pictured above with her daughter Madeleine, won a $500 Woolworths voucher kindly donated by Select Once Upon a Time. Madeleine is a patient at The Royal Children’s Hospital, Melbourne, so Dyonne registered with HeartKids Victoria. Dyonne rallied almost her entire local community to attend a light afternoon tea where many local businesses also provided generous support. Well done Dyonne, it looked like a fabulous event.

Jay is already planning his next event. Please follow their Facebook page HeartKids 24hr Charity Bike Ride – November 2014 as they will hold other events leading up to the bike ride.

Xmas Lights Dedicated Volunteer

Sarah, pictured right, handing in two donation tins, has been very resourceful in finding ways to gradually fill these tins over the last few years. Her ideas included busking at a local market, doing a regular vacuuming job, going without ice creams after school and she asked visiting family friends for a donation. Well done and thank you, Sarah!

Ron & Kath from Cobram raised $850 for HeartKids from their wond erful Christmas lights display.

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Starting School When any child starts school or moves on to high school, it can be an exciting but stressful time for parents. When your child is also a heart child who has faced many challenges it makes all these feelings more intense. Most principals and teachers are only too happy to listen to your concerns and very eager to know as much about your child’s condition as they can. You may like to refer them to the HeartKids website www.heartkidsvictas.org.au for further information and access to related sites. Heart children like to feel that they are no different from their fellow students and as far as possible, should be treated the same as their peers. However, their condition may have some impact on their schooling. If the condition is minor they will be no different from their class mates, however a major condition will have some impact. Your child’s cardiologist or paediatrician would alert you if there are any specific recommendations for your child. Please ask them to provide supporting documentation for preparation of a health care plan/First Aid action plan. Here are some suggestions for helping the transition to school: 1. We recommend that you discuss your child’s heart problems and any anticipated effect this will have on their schooling with the following people:

• Primary School - make an appointment with the principal and your child’s teacher.

• High school – make an appointment with your child’s year level coordinator, sports coordinator, welfare coordinator, school nurse (if applicable) and principal.

2. Speaking at a staff meeting early in the school year gives you an opportunity to explain your child’s needs and time to discuss any issues or questions staff may have. 3. If your child cannot keep up during physical education classes or is struggling to keep up with the class group on excursions that involve considerable walking, the class teacher needs to understand and make allowances for this.

Stuck On You

and help HeartKids! Get organised for Back to School of labels for school, Stuck on You have a huge range for school uniforms, ls kinder and childcare. From labe boxes, backpacks, h lunc school books, school shoes, s; Stuck on You able valu and hats, sporting equipment needs! have a label for all your schooling ww.stuckonyou.com.au/ You can order on-line at http://w oria / Tasmania if you Vict and raise money for HeartKids n. atio anis list us as the fundraising org

World Festival of Magic

We were fortunate to be able to offer our members free tickets to attend the World Fes tival of Magic show recently. Many thanks to the Lions Club of Melbourne Markets and to local businesses who financially support this show each year. The families who attended were delighted to be in the audience for this spectacular show. Pictured is heart child Kimmi with performer Michael Boyd.

Celebrations

4. If your child has specialist teachers, ensure they are informed of your child’s condition. 5. Complete a First Aid Action Plan, with a photo of your child, for the teacher and suggest that it be displayed in the staff room and sickbay, as well as all emergency kits. For high school students some parents suggest keeping a copy in the student’s diary and the teacher’s roll book for emergency teachers to use. 6. Ensure that your emergency contact details are always current. 7. During excursions and camps ensure a copy of your child’s Action Plan is given to the supervising teacher and accompanies the emergency kit. Please remember good communication is essential between parents and teachers and ask for support from your child’s health care professionals when necessary.

2014 Photo Request

!

If your heart child is sta rting day care, kinder or school, or moving on to second ary or tertiary studies, please send us a photo for pr inting in the magazine. W rite a brief paragraph telling us of their achieveme nt s and remember that high re solution photos print well. 22

Above: Lucas & Jodi Horvat at the opening Melton Big W Photos right: Issac & Rania Lombardo at the opening Craigieburn Big W

Lisa Catania (mum of HK Wes) recently celebrated a new decade birthday milestone! A donation to HeartKids Victoria was suggested in lieu of gifts, and her guests were very generous. An amazing $1200 was raised! "I am so grateful for the great cause and with such a such to contributions made family." my to g meanin personal


Sponsors and Supporters Victorian Partners:

National Supporters: Founding Sponsor

Principal Partner

Major Partners

Foundation Partner

Corporate Supporters

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Diary Dates

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onth ids Awareness M February - HeartK Bike Show  &  Sunday 2 February - Tasmania Car for the Kids’  bruary - ‘A Night  Friday 7 Fe d en ek we a Ike  6 February Fri 14 – Sun 1  chmond) (Springvale and Ri  r p Family Fundraise   ebruary - Tree To Sunday 16 F  lf Day ry - HeartKids Go Friday 21 Februa  ikids event  Sunday 2 March - Devonport Tr Town picnic Shepparton Kids  nday 30 March – Su  ds Ki e th r fo n Ru – Sunday 13 April   Friday 18 April – Good Friday Appeal azz show  April – Razzamat  Saturday 26

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eck inside or these events ch For more about .au victas.org to www.heartkids

MELBOURNE METRO BRANCHES Bayside Cassie Clarke 0499 741 116 cassielouisehk@gmail.com East Bentleigh Maggie Stavrou (03) 9563 7133 maggiestavrou@live.com.au Bundoora Amy Heafield 0421 518 366 amy.heafield@heartkids.org.au Dandenong Lucy (Fatima) Hussain 0430 738 820 Melton Lauren Tyrrell 0424 594 757 lauren-tyrrell@hotmail.com Pakenham Joanne Arrowsmith (03) 5967 7083 joarrow@bigpond.net.au Wantirna Janita Felici 0422 976 024 janitafelici@gmail.com REGIONAL BRANCHES VICTORIA Albury/Wodonga April Schubert 0407 551 967 (02) 6056 6448 april_peter@internode.on.net Bairnsdale Caroline Foard 0438 928 821 cfoardy@yahoo.com Ballarat Rohini Dobell 0407 851 648 rohisew@hotmail.com

go

HeartKids Vic Inc CONTACT US PO Box 803 Parkville Victoria 3052 P: (03) 9329 0446

ARN: A0021470B ABN: 16 336 986 918 VISIT US Suite 310 / 55 Flemington Road North Melbourne 3051

E: heartkids@heartkids.org.au Facebook: HeartKids Victoria (including Tasmania)

www.heartkidsvictas.org.au

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Contact Details Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 goliathgroup@bigpond.com Cobram Bianca Quinane 0419 674 408 biancz1979@hotmail.com Echuca/Moama Tracey Hard 0438 962 056 tracnsteve@bigpond.com Geelong Libby Gibson (03) 5250 2439 0411 057 905 libway2000@yahoo.com Horsham Gaynor Baker (03) 5384 2280 mtbcarpentry@bigpond.com Kyneton Lauren Roberts (03) 5427 2696 laurie102@hotmail.com Latrobe Valley Sophie Werner 0427 955 453 sophia.werner@bigpond.com Mildura Fiona Dowie 0438 396 790 ryan.dowie@bigpond.com Portland Kerry Sluggett (03) 5523 2503 0418 312 320 ksluggett@iinet.net.au Shepparton Cheryl Alexander (03) 5825 4005 chezalex70@bigpond.com South Gippsland Kerrie Disney (03) 5182 5531 0409 950 608 urme2@tpg.com.au Stawell Leanne Amarant (03) 5358 2945 or 0419 864 412 leanneamarant@hotmail.com

Wangaratta Lisa Dekeling 0421 655 636 & Shane Hack 0488 221 184 lisadekeling@optusnet.com.au Wonthaggi Erin Howell 0431 702 863 howells8@bigpond.com TASMANIA Burnie Amanda Riley 0448 330 611 amanda.riley1@bigpond.com Gail McFarlane (03) 6431 2127 0488 033 789 themcfarlane4@bigpond.com Devonport Claire Gluyas 0408 351 661 richardsclaire@yahoo.co.uk Hobart Paul Hyland (03) 6247 8435 0418 561 504 paul.hyland1@bigpond.com Launceston Kylie Smith (03) 6393 6240 0448 983 587 kylie.smith@heartkids.org.au INTERSTATE Contact details at: www.heartkids.org.au SPECIAL INTEREST GROUPS BEREAVED FAMILIES EMAIL SUPPORT http://www.hearts-of-hope.org/ support/bereavment/intro.htm PACEMAKERS Mandy Tichelaar (03) 9728-6984 22q11 Audrey Cater (03) 9394 7965 0420 500 905 audrey.cater@bigpond.com

EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 kjsrms@bigpond.com OVER 18’s Erin Cervelli (03) 9513 9030 hearts4heart - Support for Adults with Heart Disease Tanya Hall 0426 240 636 info@hearts4heart.net.au hearts4heart.net.au KAWASAKI DISEASE Shirley Mates (03) 9894 1257 info@kdfoundation.org.au Website: www.kdfoundation.org.au KABUKI SYNDROME Stacey McKiernan (03) 5275 1542 stacey@sakks.org Website: www.sakks.org HYPOPLASTIC LEFT HEART SYNDROME & SIMILAR CONDITIONS www.hearts-of-hope.org Leanne Amarant (Victoria) (03) 5358 2945 Leanneamarant@hotmail.com Csaba Ovari (Tasmania) (03) 6229 8169 csaba.ovari@hearts-of-hope.org LONG QT SYNDROME (LQTS) Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids.org.au www.sads.org.au or www.sads.org.uk/ CARDIOMYOPATHY ASSN of AUST. Website: www.cmaa.org.au/ MUSLIM FAMILIES Lucy (Fatima) Hussain 0430 738 820 MULTIPLE BIRTHS April Schubert (02) 6056 6448 0407 551 967 april_peter@internode.on.net

2013 2014 summer heartkids victoria tasmania magazine  

Magazine for families and friends of HeartKids Victoria-Tasmania

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