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Autumn 2014

Quarterly Magazine for Victoria and Tasmania

* Grants-In-Aid Program * Teen Camp *

Volume 24 Issue 1

A Night for the Kids

support

awareness

research

advocacy


Matters of the Heart -

Chief Executive Officer In this edition of our magazine you will no doubt notice a number of exciting developments and events for HeartKids.

Firstly, looking back over the past few months, we held our Night For the Kids function at Atlantic Docklands to raise both awareness and funds. This function was only made possible through the hard work and generosity of David Perrin. The evening featured presentations from Dr Michael Cheung, our very own Tracy Stanley and Samantha McGowan, whose daughter Scarlett is a heart child. The function coincided with the start of HeartKids Awareness Month which featured Sweetheart Day on February 14. Our special thanks go to Russell Cambridge (who also helped raise the pledges at Night for the Kids) and the entire team at Biggin and Scott who literally rolled their collective sleeves up to get involved in selling Sweetheart merchandise and to conduct a Facebook competition to raise funds. They continue to amaze us with their incredible passion and support of HeartKids. Also in February was the national announcement of our annual GrantsIn-Aid program where HeartKids Australia fund various major research projects to continue to address the issues of Childhood Heart Disease (CHD), and its effects on children and their families. A total of eight major initiatives were announced. See page 9 for details. HeartKids Victoria/Tasmania has also begun to adopt a new platform of programs which reflect our work with children and families. The six new programs are an exciting new way of presenting what we do, to make it easier to communicate and to better position us for development. Another new initiative which is being developed is the annual HeartKids Heart Awards. Further information on these will also be found in this edition of the magazine. Finally, can I again say, on behalf of our Board and our staff, how very grateful we are to all who volunteer their time in supporting our work. It really is invaluable and without this help it would be significantly harder to achieve all that we would like to. Warm regards Norm Norm Hutton CEO HeartKids Vic/Tas

children with heart HeartKids Vic Inc proudly supports Victoria and Tasmania. out ugh disease and their families thro r to the back page for For Tasmanian enquiries - please refe tact details. con s’ ator our Tasmanian Branch Coordin

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 * Membership/Magazine Coordinator Margaret Patullo margaret.patullo@heartkids.org.au * Office Manager Sandra Zlatanovski sandra.zlatanovski@heartkids.org.au * Operations and Administration Coordinator Paola Rossi paola.rossi@heartkids.org.au * Fundraiser & Events Coordinator Pruedonce Bainbridge fundraising.victas@heartkids.org.au * Magazine heartkids@heartkids.org.au

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

& Max Corrigan Front cover: Brax Jackson, Noah Kelly u phy www.trishreedphotography.com.a ogra Phot Photo courtesy of Trish Reed information for this edition. Thanks to all who sent photos and - send to: heartkids@heartkids.org.au ome welc ys alwa are ions Contribut s. ts On Call for printing our magazine Thanks to Fuji Xerox and Documen es. imag al digit e processing of som Thanks to Gordon Patullo for post

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Coming Events

In This Issue

3-4 Coming Events 4 Biggin & Scott 5 A Night for the Kids 6-7 HeartKids Awareness Month Activities 8 HeartKids Education Day 8 HeartKids Australia News 9 HKA Grants-In-Aid Awards 2014 10 Heart Children Reaching Milestones 11 Macca's Story 12-13 Teen and Transition News 14 Support Matters 15 Hospital Happenings 16-17 Reflections 18 Branch News 19 Tasmania News 20-21 HeartKids Families Enjoying Activities 22 Donation Acknowledgements 23 Sponsors and Supporters 24 Contact Details and Diary Dates

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Coming Events Informal Lunch for Parents & over 17's Date/Time: Saturday 31st May, 11am - 2pm Venue: Doncaster Pancake Parlour, 550 Doncaster Road. Get-Together for Parents & Young Heart Adults. Meals at your own cost. Parents and their young adults are welcome to attend together or on their own. Heart Angel parents are most welcome. RSVP & for more details: margaret.patullo@heartkids.org.au

An Evening for Tina: Saturday 7th June In March 2013, the Nelson family were devastated when beloved mother and wife, Tina, passed away suddenly at the age of 39. Tina suffered from hypertrophic cardiomyopathy, a condition that her two sons also have. Tina was a passionate supporter of HeartKids and her husband Matt and her two boys, Hamish and Claude, are determined to raise money in Tina's name for the organisation. Since her passing, the family and friends have raised over $32,000 and are busily working on the annual movie night which will be held at 6pm on 7th June 2014 at the Benalla Performing Arts Centre. More event updates will follow and for more information please contact Matt Nelson on 0400 841 732.

Family Camp Put the date in your diary for our family camp, planned for Friday 19th - Sunday 21st September. Watch for more details in our Winter magazine and on our events calendar: www.heartkidsvictas.org.au Latest News, Events Calendar

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SENSATIONAL SHOWGIRLS &&HIS &HIS HIS SENSATIONAL SENSATIONAL SHOWGIRLS SHOWGIRLS

Biggin & Scott SOLD on HeartKids Paul Stoner, Biggin & Scott CEO, was very pleased to hand over a donation from their Facebook fundraiser to Phil Riggio, HeartKids Chairperson

Biggin & Scott’s Russell Cambridge was the auctioneer on Channel 9’s The Block in 2011 for winning contestants Polly and Waz, who had a personal connection to Childhood Heart Disease (CHD) when a friend’s baby sadly died after battling CHD. During their time on The Block, Polly and Waz utilised the media to talk about CHD and HeartKids. HeartKids were delighted to be the beneficiaries of Biggin & Scott’s commission from the sale of the apartment. This was the start of a beautiful friendship between HeartKids and Biggin & Scott. Russell explained that it was Polly and Waz’s passion and enthusiasm towards HeartKids that instigated the decision to select HeartKids as Biggin & Scott’s charity of choice. In 2013, when Russell was asked to be the auctioneer for Madi and Jarrod on The Block Sky High, the deal maker was that the chosen charity had to be HeartKids! Biggin & Scott’s support is varied and far-reaching. To highlight some of Biggin & Scott’s generosity: Auctioneers for our events, advertisements in their weekly Abode magazine, volunteering on Sweetheart Day, conducting a Facebook campaign during HeartKids awareness month, generously donating $30,000 towards MonashHeart and actively promoting HeartKids through their rental and sales boards. HeartKids Victoria/Tasmania really appreciates the ongoing assistance of Biggin & Scott Corporate and all their branches for their passion and support championing our cause.

NOW NOW NOW

MADISON AGED YEARS MADISON MADISON AGED AGED 1414 14 YEARS YEARS

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AUCTIONS AUCTIONS • •LIVE •LIVE LIVE AUCTIONS AUCTIONS • •SILENT •SILENT SILENT AUCTIONS AUCTIONS MEAL • •3-COURSE •3-COURSE 3-COURSE MEAL MEAL • •RAFFLES •RAFFLES RAFFLES &&MORE &MORE MORE ULTIMA RECEPTION CENTRE ULTIMA ULTIMA RECEPTION RECEPTION CENTRE CENTRE CNR KEILOR PARK DRIVE CNR CNR KEILOR KEILOR PARK PARK DRIVE DRIVE COURT, KEILOR. &&ELY &ELY ELY COURT, COURT, KEILOR. KEILOR. TICKETS $100 EACH. TICKETS TICKETS $100 $100 EACH. EACH. DRESS CODE: DRESS DRESS CODE: CODE: EVENING WEAR, EVENING EVENING WEAR, WEAR, DRESS TO IMPRESS. DRESS DRESS TO TO IMPRESS. IMPRESS.

BOOK NOW! EMAIL ANTHONY FLAPPER AFLAPPER@MATSTEER.COM.AU BOOK BOOK NOW! NOW! EMAIL EMAIL ANTHONY ANTHONY FLAPPER FLAPPER AFLAPPER@MATSTEER.COM.AU AFLAPPER@MATSTEER.COM.AU ALL MONEY TO HEART KIDS! ALL ALL MONEY MONEY TO TO HEART HEART KIDS! KIDS!

mond office who achieved The staff of Biggin & Scott Rich Federation Centres the highest fundraising effort at


A Night for the Kids A Night for the Kids was held on 7th February at Peninsula, Docklands launching HeartKids Awareness Month. The event was made possible by the generosity and hard work of David Perrin, father of a heart child, and it was a great success. The evening was hosted by Nic Yates and the audience was informed about CHD and the work of HeartKids from a variety of speakers including: • A Welcome from our CEO Norm Hutton • David Perrin was interviewed about the reason behind the event and his family’s experience with their heart child Monty • Director of Cardiology at The Royal Children’s Hospital (RCH), Assoc Professor Michael Cheung’s presentation “Healthy hearts start in childhood” informed guests about heart disease in children – congenital and acquired, the work of RCH Cardiac and Surgical teams, research and family coping • Our Support Manager Tracy Stanley was interviewed about the work of the Family Support Team, and • Samantha McGowan shared her daughter’s heart transplant journey Guests were entertained by Nick Cushen, Bangstrum LADS and there wasn’t a dry eye in the room when John Trager performed “Let Your Angel Fly” in honour of Blake Gordon-Cooke who sadly passed away in September 2013 while video footage of Blake’s journey played. Biggin & Scott’s Russell Cambridge did an outstanding job encouraging pledges from our guests. We are pleased to announce that from pledges, silent auctions and the raffle, the event raised nearly $50,000. We would like to thank the following for making the night a success: • David Perrin for his devotion to this event • Nic Yates • Russell Cambridge from Biggin & Scott • Michael Cheung • Samantha McGowan • Nick Cushen • Bangstrum LADS • John Trager • Paull & Diane Gordon-Cooke • Austage • Mike Hall • Paul Rumble • Epic Photography • Signwave • The Atlantic Group • Signed and Framed • Our HeartKids staff and volunteers

MC Nic Yates

Assoc Prof Michael Cheung

Support Manager, Tracy Stanley

John Trager

Samantha McGowan

Russell Cambridge drumming up pledges from the audience

Paull & Diane Gordon-Cooke with John Trager

Chairperson Phil Riggio, David Perrin and Norman Hutton

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HeartKids Awareness ... February was HeartKids Awareness Month and we’d like to take this opportunity to thank everyone for their fabulous contributions and hard work, which helped raise awareness and much needed funds to enable us to continue our work supporting children and families affected by Childhood Heart Disease (CHD). We appreciate the time you have taken to assist us in our fundraising and in further educating the community about the importance of our charity and the positive impact it has on many people’s lives.

‘Sweetheart Day’ On February the 14th, Valentine’s Day, our dedicated volunteers set up and sold various types of merchandise at ‘Sweetheart Stalls’ that we were able to organise at nine different locations throughout Melbourne, thanks to the very generous Federation Centres. Amongst the items that were sold were gourmet lollypops and jelly beans, teddy bears, CD’s, pens, gift cards, key rings and gorgeous wicker hearts; with most items selling for less than $10.

Train Station Collection Fundraiser

One of HeartKids’ corporate sponsors, Biggin & Scott, had staff members located at four of the Federation Centres. Their friendly competitive spirit encouraged a competition to raise the highest sales, and this resulted in the Victoria Gardens Stand being the winner, with total day sales of $1,921.05. Well done to all those who competed and helped out, and of course to our ‘winners’ of the day. On 7th February, thirty dedicated HeartKids volunteers put on their HeartKids shirts and shook money tins at 26 train stations around Melbourne and suburbs to help raise funds and awareness amongst the community. It was a 36°C day however our amazing group of volunteers soldiered on in the heat, and managed to collect over $2000. What a great achievement!

IKEA Sweetheart Day Activity

Diane Gordon-Cooke and friends set up a stall at Bendigo Market Place on Valentine’s Day to help raise awareness about HeartKids. They were busy selling copies of the newly launched CD ‘Let Your Angel Fly’, as well as Sweetheart Day merchandise.

The total amount raised was over $15,000. Again a huge thank you to everyone for their fantastic efforts on the day, as this fundraiser would not have been possible without the generosity and time donated by our volunteers.

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On February the 14th, 15th and 16th, IKEA supported us by running craft activities in their Springvale and Victoria Gardens stores where, in exchange for a gold coin donation, children were able to decorate hearts. They produced beautiful hearts for us to pass on to the children on the cardiac ward at The Royal Children’s Hospital, which were very well received. We would like to thank IKEA for their support, and are happy to announce that $430.90 was raised.


... Month Activities Golf Day

On 21st February, a fundraising event was organised at the picturesque Rosebud Country Club. Seventy-one HeartKids’ supporters and sponsors braced themselves for the cold, wet and windy weather conditions to raise money for HeartKids. Playing the Ambrose game, all players set out for a fun and competitive 18 holes, as well as a few different additional competitions, before sitting down for a warm lunch. On the first hole players navigated the wind to try and land their ball through the goal posts. Other games included: closest to the tree, nominating a team member to wear an eye patch during their shot and attempting to toss marshmallows into a hula hoop. The players enjoyed a funfilled day of entertainment and activities; and thanks to some very generous donations made to HeartKids, players competed against each other for a chance to win a prize during our lunch raffle. All in all, it was a great day out and we are very grateful to those who attended and supported our Annual HeartKids Golf Day. Special thanks to Equity Trustees, House of Golf, Rosebud Country Club, Betty McDowell, Goonawarra Golf Clubs and everyone who made this day possible.

Biggin & Scott Facebook Fundraiser

A huge thank you to our corporate sponsor Biggin & Scott Corporate, who helped us by donating $1 to HeartKids Victoria/ Tasmania for every ‘like’ on their Facebook page. A total of $533 was raised which is a great effort, so thank you very much to Biggin & Scott for their ongoing support.

HeartKids Victoria/Tasmania Facebook Campaign

During February we posted statistics, facts and featured the Faces of CHD. In order to view the album please visit our Facebook page, click on photos and select the album “Faces of CHD”. The Awareness month campaign significantly increased activity on our page, with our reach peaking at 71,825, which is amazing. We would like to thank all the families who shared their children’s stories during HeartKids Awareness Month, as this really assisted us in informing more people about CHD. We also remembered our angels and celebrated our survivors during February. Please keep raising awareness any way that you possibly can, as CHD doesn’t just affect our children and their families for one month of the year - it is an ongoing struggle.

CHD Day at The Royal Children’s Hospital

Our wonderful friends, The Cake Angels, kindly donated some delicious baked treats for our families at The Royal Children’s Hospital on 14th February which is International CHD Awareness Day. Thank you so much to The Cake Angels for your ongoing support and generosity.

Article written by Christina Georgiades-Sikalias

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H e ar tK id s E d u ca ti o n D ay

gust Save The Date - Saturday 2nd Au at The held in Melbourne HeartKids Education Day will be rday 2nd August. Royal Children’s Hospital on Satu be posted on our Details are being finalised and will website and Facebook page.

HeartKids Australia News One of HeartKids key pillars is to raise awareness of CHD, and February was CHD Awareness month. This keeps all the HeartKids offices busy for the start of the year and HeartKids Australia has been busy with awareness raising activities and also with the announcement of our 2014 Grants-In-Aid recipients.

Sweetheart Day The inaugural Sweetheart Day took place on Friday 14th February with activities and publicity across media around Australia.

ANZ Fontan Registry E d u c a t io n D a y

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August ANZ Fontan Registry Ed ucation Day for Fonta n Patients and their families at MC RI, The Royal Children ’s Hospital, Melbourne Details are being finalis ed and will be posted on our website and the ANZ Fontan Registry Facebo ok Page.

news Do you receive our E 'Heart of the Matter'? ease

HeartKids’ sponsors came on board with fantastic support; HCF sold merchandise at every branch, Retail Food Group created a “meme” generator and donated 20c for every message of love sent and IKEA hosted in-store children’s craft activities for gold coin donations in many states. Stories about CHD featured on a wide variety of media with coverage on television, major and regional newspapers, radio and websites across Australia.

r monthly Enews - pl Don't miss out on ou ur email address. make sure we have yo update us when you A reminder to please dress. change your email ad

Coming Soon ... HeartKids Awards Initiative HeartKids Victoria/Tasmania will be introducing a new initiative to recognise those within our community who contribute to raising money, building our profile or providing support to our heart children and their families. The Board has approved this development, and we are currently setting up a committee to progress further with this initiative. This proposal will firstly give us the opportunity to reward and thank people for all their generosity and kindness, in donating time, effort, money; and basically being empathetic and actively playing a role in making a difference in the lives of those affected by Childhood Heart Disease. Further details will be communicated as soon as the nomination selection criteria, nomination process and Awards ceremony are approved. Written by Christina Georgiades-Sikalias

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Grants-In-Aid Program We also announced the recipients of the 2013 Grants-In-Aid research funds at a launch evening hosted by our sponsors Wilson HTM at their offices in Sydney. The HeartKids Grants-In-Aid program is designed for short term research projects. The projects are funded with the help of our sponsors Wilson HTM, HCF and Kiwanis. This year seven research projects were funded, looking at a wide variety of areas concerning CHD. We’re happy to have been chosen as a minor partner once again by Chain Reaction, whose NSW bike team have just done their ride throughout Tasmania this year helping raise funds for charity. Thanks so much to Jodie, Fiona and Gavin the Heartkid family who shared their story with the riders and helped inspire them on their ride. With best wishes from everyone at HeartKids Australia, Kind regards, Jann Jann Kingston CEO HeartKids Australia


HKA Grants-in-Aid Awards 2014 HeartKids Australia is delighted to announce the research projects to be funded under their Grants-in-Aid program in 2014. The Grantsin-Aid program supports research projects and research capacity building in congenital and acquired childhood heart disease. HeartKids Australia would like to thank Wilson HTM Foundation (the Founding Partner of this program), HCF Health Insurance, Kiwanis Australia, HeartKids Queensland, HeartKids Victoria/Tasmania and HeartKids New South Wales for their support. The seven research projects to be funded in 2014 are as follows: Principal Investigator: Dr Julian Ayer Project: Improving exercise capacity in children with a Fontan circulation after the extracardiac conduit. Institution: The Heart Centre for Children, The Children’s Hospital at Westmead and the University of Sydney. Additional Investigators: Prof David Winlaw, Prof Hiran Selvadurai, Dr Rajesh Puranik, A/Prof Gary Sholler, Dr Phillip Roberts and A/ Prof Yves d’Udekem. Project Description: Some children with complex congenital heart disease are born with one instead of two pumping chambers (ventricle). These children undergo a series of operations, allowing blood which is low in oxygen to “passively” drain to the lungs and the single ventricle to pump blood to the body (total cavopulmonary connection). These children have a substantially reduced ability to exercise. The mechanisms for impaired exercise capacity and the strategies for improving it are not well understood. We aim to perform studies which examine the mechanisms for reduced exercise capacity and potential strategies for improving it. Principal Investigator: Ms Miranda Campbell * Project: Investigating the need for neurodevelopmental follow-up for infants undergoing open heart surgery. Institution: Queensland Paediatric Cardiac Service, Mater Children’s Hospital. Additional Investigators: Ms Rachel Thomas. Project Description: The Queensland Paediatric Cardiac Service has established a neurodevelopmental follow-up clinic to provide multidisciplinary follow-up for children with congenital heart disease. The follow-up clinic is currently limited to three diagnostic groups: transposition of greater arteries; hypoplastic left heart syndrome; and, post extracorporeal life support (ECLS) treatment. This project will screen all infants under 12 months who undergo open heart surgery; pre-surgically, at 24-hours post discharge from intenstive care and before discharge from hospital. The scores will be used to compare the risk of poor developmental outcomes in infants as a function of follow-up clinic status. Principal Investigator: Professor Michael Davies Project: Exposures during human embryo development and the risk of congenital heart defects. Institution: The Robinson Institute, The University of Adelaide. Project Description: We have recently established that there is an excess of heart defects in children born after infertility treatment. We now have the unique opportunity to undertake a retrospective analysis of conditions during embryo development that contributed to adverse outcomes for these individuals. Factors will include maternal pre-conception disease, medications prior to and during pregnancy with a focus on ovulation drugs, embryo quality and growth, and semen parameters. The results will have implications for infertility treatment, medication use, patient choice in the infertile population, and will identify candidate factors for investigation in the general population. Principal Investigator: Professor Alun Jackson * Project: Family coping with child heart disease. Institution: Heart Research Centre The Robinson Institute, Royal Melbourne Hospital. Additional Investigators: A/Prof Erica Frydenberg and Dr Barbara Murphy. Project Description: Childhood heart disease (CHD) can place families under strain as they adjust to the circumstances of their child’s condition and strive to cope with the impact of these changed circumstances on the family as a

whole and on family members in their various roles as parents and siblings. Starting from the framework of a tested parenting model, the Parents can do Coping program, this project will explore family coping with CHD and identify the specific needs of these families that could be met through an adaptation of the program. Principal Investigator: A/Prof Brigid Jordan * Project: Infant and Family Well-being after Cardiac Surgery: The Role of Psychosocial Support. Institution: Murdoch Children’s Research Institute, Melbourne. Additional Investigators: A/Prof Michael Cheung, Prof Vicki Anderson and Dr Candice Franich-Ray. Project Description: Children who have cardiac surgery and their families experience significant separation, trauma and stress and are at high risk of emotional, behavioural and family relationship difficulties which have negative consequences later in life. Our research will explore the mechanisms contribuing to negative outcomes and document the availability and use of formal and informal psychosocial supports by parents. Our secondary aim is to determine what predicts parent and child social-emotional well-being. The critical information will allow us to target psychosocial care for infants and families and guide effective interventions to improve the quality of life and outcomes for these children. Principal Investigator: Dr Nadine Kasparian Project: Biomarkers of parental stress after fetal diagnosis of complex congenital heart disease. Institution: The Heart Centre for Children, The Children’s Hospital at Westmead and the University of NSW. Additional Investigators: Prof Marie-Paule Austin, Prof Vivette Glover, A/Prof Gary Sholler, A/Prof David Winlaw, A/Prof Edwin Kirk, Prof Bryanne Barnett, Ms Dianne Swinsburg, Prof Nadia Badawi, Dr Kerry-Ann Grant, Dr Karen Walker, Professor Adrian Bauman and Ms Karen Sherlock. Project Description: Parents and families experience high stress and anxiety after receiving a diagnosis of complex congenital heart disease (CHD) in their baby. Very little is known about how the timing of this diagnosis affects parents physically and emotionally, and how this may affect their baby’s growth and development. This study will be the first to examine the ways in which mothers and fathers respond physically to the stress associated with a diagnosis of complex CHD during pregnancy. This will be achieved by examining the role of salivary cortisol as an indicator of stress in parents during pregnancy. Principal Investigator: Professor Chris Semsarian Project: Genetic testing in children at risk of heart disease. Institution: Centenary Institute. Additional Investigators: Dr Jodie Ingles. Project Description: Genetic heart disease includes inherited cardiomyopathies (heart muscle diseases) and primary heart rhythm disorders. If a diseasecausing gene fault is identified in a family, then this information can be used in other family members, especially children, to test for the gene fault, known as predictive genetic testing. No guidelines exist regarding genetic testing or inherited heart diseases in children. Our clinic experience suggests that genetic testing can be a very useful tool in early identification of gene carriers amongst children and have minimal emotional impact. The proposed study will answer many unresolved questions about the impact of predictive genetic testing in children, how early diagnosis in children can allow for initiation of early prevention strategies, and provide a basis for the development of guidelines that will standardise genetic testing approaches in children across Australia at risk of heart disease. * Funded by HCF Health Insurance

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Heart Children Reaching Milestones Tom

James

Oliver Here is three year old Oliver on his first day of kinder this year. He had his heart surgery when seven months old and continues to have a heart scan every year to keep an eye on things. Thanks to the surgeons and the staff at the hospital, Oliver has made a great recovery.

James’ family is so proud of their little star. He is their little miracle - from not being expected to live in 2008 to his first day of school in February 2014.

Natasha

Tom was born with TGA, Coarctation of the Aorta and several holes. He loves Lego, his cars and dinosaurs and is very excited about being in prep this year. Tom is pictured with his teacher, Ms Charlotte Sowerby.

Lucas

Jesse Lucas, who has HLHS, started Grade prep this year at St Lawrence Primary School. He is loving school and his family couldn't be more proud of him. It’s such a big milestone!

Natasha, 12 years old, has just started in year 7. She had an ASD closure in 2005 and is now healthy Iheart-wise, was very for which her family are very grateful to all the Cardiology Team members.

Here's Jesse on his first day of school this year. He is coping very well with his heart condition, Truncus Arteriosis, and will require further surgery most likely in the next 1-2 years. Jesse’s family are very proud of him.

Mickie

Kyle

Ava

This is Kyle, in the blue hat, with his identical twin brother Ethan, on their first day of kinder this year. The boys were born prematurely at 32 weeks and then Kyle was diagnosed with Tetralogy of Fallot, ten days after birth.

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Watching Kyle run through the kinder gates with his lunch box in his bag was a great achievement!

‘Mickie’s first day of prep, he loves it!’

Here is Ava attending her first day of school with her two brothers. Ava has AVSD and had surgery when she was one month old. Her family loves her very much and they are very proud of her.


Macca's Story A Champion in more than one way Eight year old Macca Harrison-Kern prepares to take on the Kids Brazilia n Jiu Jitsu World Championships this July with more than just the intentio n to win. Named after his grandfather Allan MacGregor, Macca is the first Australian child to participate in the World Championships and aims to fulfil his dream to become World Champion. Macca is a serious contender, and has already won the 2013 Pan Pacific Championships in the 8 year old 32kg division, a little more than a year after he formally began training in Brazilian Jiu Jitsu. This competition cemented his spot in that division, as Macca had no rivals from Australia to Japan. What most people do not realise is that Macca was born with Aortic Stenosis, an abnormal narrowing of the aortic valve, which restricts the flow of blood from the ventricle into the aorta. At 3 months old, it was necessary for a balloon to be inserted between the cusps of the valve in Macca’s heart to separate them so that it could function properly. Without that procedure, his heart would continue to leak badly and his life was in danger. The prospects of him leading a normal life seemed highly unlikely, and to excel in a sport, totally unachievable. Macca got through his early childhood, with regular hospital check-ups, and although smaller than many of his classmates, showed signs of a special inner strength. He will require the balloon valvuloplasty again in his life, at least once. Despite this, Macca remains a “very motivated, very empowered little guy,” and “life is a big training match for us”, laughs Anton, his father, who is also a practitioner of Brazilian Jiu Jitsu. “Treat him like a normal little boy”, were the words from his doctors to the family and it is certainly a philosophy that has been lived by, with fond memor ies of the lounge room being turned into a makeshift practice space with “mattresses and doonas” everywhere.

Update: Macca won the 9yo Gi 36kg division at the Victorian State Championships on 5 April 2014.

Amazingly, Macca will not only be the first Australian child ever to compete in the world championships, he will be the first child with a heart condition to compete at this level as far as his family knows. Macca realises how fortunate he is, and he wants to give back. It has now occurred to him that he can become an inspiration, and possibly a role model, to other children with similar illnesses. He wants to encourage them to set goals as high as their condition will allow. As Macca himself has asserted, “If it’s going to help people, I’ll do it” and he aims to become an Ambassador of HeartKids in the future to show that life does go on despite illness. Through a campaign with Go Fund Me, Macca is also raising money and awareness for HeartKids. His family are creating a professional documentary of his expedition so that it can be used to inspire other heart children and their families. Anton said HeartKids was a huge support to him and his family in the period before and after Macca’s procedure. He explained, “They were involved in counselling our family through that time, and offered a support base and community.” He spoke about how it was difficult for himself and his family to deal with Macca’s condition initially, as “No guy really wants to accept that their son is sick”. It is another aim of the documentary to help other families going through the same issues. To follow Macca and his journey, please like his Facebook page https://www.facebook.com/maccabjj

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Teen and ... Teen Camp 2014 Teen Camp – Lutanda, Mount Victoria, NSW Day 1 Campers travelled from all over Australia to Teen Camp held from 17th to 20th January. It was a very long journey for some, particularly for the campers from Western Australia, who departed Perth at 4am, and for the camper from the Northern Territory, who departed Darwin the day before. As many of the campers had travelled from far afield, the first evening was relatively quiet. Night-time activities included a number of ice-breaker and get-to-know-you type activities, and campers had the opportunity to meet their activity group, reunite with old friends and meet those who had not attended camp before.

Day 2 On Saturday morning after breakfast, everyone split in to their activity groups. In addition to old favourites like the high and low ropes course and the flying fox, campers participated in different activities like crate-stacking where, while in a harness, campers had to stack as many milk crates as possible then stand on top of them, and a photo-chase, where campers had to obtain photos of a list of items, situations or people, including the camp manager. The BMX course was popular, even though some campers required a crash course in riding a bike before they could attempt the course. On Saturday afternoon temperatures reached a record 34°C at Mt Victoria. It was decided that a water fight should be held at the end of the scheduled activity program, to cool everyone down. Large garbage bins were filled with water bombs in preparation. Once all of the water bombs were expended, water pistols, drink bottles and bins were used as vessels to hold and throw water – not many people escaped getting wet. Later that evening was the much anticipated ‘circus’ theme fashion show, karaoke and dance. There were some outstanding

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costumes (and performances) this year, with so much forethought and effort going in to a number of costumes. Onesies were particularly popular, but weren’t a good match for the climate and many campers had to get changed out of their costumes so they could cool down.

Day 3 The activity program continued on Sunday, with slightly cooler temperatures than the day before. Blackheath Pool, which is usually known for its refreshing temperature, provided some respite from the heat. Campers played ball games whilst lazing in the pool. The BMX track continued to provide a challenge. As an early start was anticipated for the next day, the Sunday night activity program was somewhat subdued. After dinner everyone gathered in the hall and was provided with instructions to design a fabric heart with their name on it. Each heart was then glued to a large heart on a fabric banner, which re-created the Sweetheart Day logo for Teen Camp. Following that activity, groups were given part of the lyrics of a song and then had to guess the next lyrics in the song. This proved to be quite entertaining… There were some interesting alternative lyrics suggested for a number of songs… who knew that there were so many creative and talented lyricists amongst the group of campers and staff?

A Camper’s View: On Teen Camp I met some amazing people - people like me, who have heart conditions and who had experienced the same things. Meeting these people helped me to talk about my heart condition, about my surgery and everything else. After just one day on camp you make heaps of new friends and you have heaps of fun! The activities on camp were awesome and everyone was so supportive, even when someone didn’t want to try an activity. One activity on camp was a dress-up night which was really fun because we had karaoke, a costume contest and a party afterwards. Whilst I was on camp the weather was really warm so we had a huge water fight - ‘everyone against everyone’. It seemed to go on forever as I ran out of water balloons. It was so awesome! The food on camp was fantastic. My saying has always been “a camp is only as good as the food” and this camp was definitely great. I would rate HeartKids camp as one of the best camps I’ve been on in a long time, purely because of the amazing people I met and the leaders who were all extremely nice and caring. Written by Joey Hammill


... Transition News Teen Camp 2014

Day 4 After an early breakfast everyone farewelled Lutanda and boarded coaches to take them to Scenic World in Katoomba. Campers and staff had morning tea in their groups before going into Scenic World. All enjoyed the different experiences that Scenic World had to offer, such as the Scenic Skyway, which at 270m above the ground, provided breathtaking views of the Three Sisters and Katoomba Falls, as did the Scenic Cableway. The Scenic Railway, which is the steepest passenger railway in the world, was also a firm favourite. After walking around the Scenic Walkway and sampling the different experiences, the campers and staff boarded the buses bound for Sydney airport or met their families to be escorted home. It was a long journey home for some, with the last camper boarding a flight after 9.00pm.

Transition Support Services at RCH Hello from the RCH Transition Team, This year has been off to a flying start for the team! We are working hard on many projects and exciting events and have been busy catching up with many young people and families this new year. Our team is pleased to be collaborating with Livewire (Starlight) and the ChIPS program to stage the first ever "Graduation Ceremony" for young people leaving the care of the RCH soon, along with those who have recently transferred. Also attending the Graduation Ceremony will be friends and families as well as the healthcare teams who have been a part of young people’s journeys at the RCH. We hope that this event will help young people and families to experience transition to adult care in a very positive and meaningful way and provide an opportunity for the RCH to formally acknowledge the time that young people have spent at the hospital. ‘Graduates’ will be presented with a special certificate by RCH Executive at this ceremony followed by a shared dinner. Another great project we have been working on is the 'Team of Life', a collaboration with the Dulwich Centre Foundation in Adelaide. We are very lucky to be working with David Denborough and his team of experienced narrative therapists to provide young people and their families the opportunity to take part in these enriching sessions. Within the ‘Team of Life’ sessions, young people and their families can reflect on their journeys at the RCH in a creative and supportive way. Participants are asked to create their own ‘teams of life’ identifying people/things/activities which have been an influential part of your lives. David and his team have been running this program in many different settings both in Australia and internationally. We have upcoming sessions which all patients and families are welcome to attend. There are three sessions to choose from - Thursday 10th April, Thursday 17th April or Thursday 12th June. All sessions are free and will be run at the RCH. Finally keep your eyes peeled in the coming weeks for information about our 2nd annual education forum ‘Study With Your Health, Not Against It!’ on June 25th, an initiative of the Transition Support Service, Ronald McDonald Learning Program, Capital City Local Learning Employment Network and Livewire. This free event is designed for young people in grades 10-12 who have a chronic health condition/disability, parents and teachers. There will be useful and important information about the supports available during the VCE/VCAL years, course options available, assistance with career planning, scholarships information and fun activities focused on helping young people achieve balance and a well state-of-mind during these busy senior years at school. This year’s forum will be held on 25th of June at Victoria University's Convention Centre in Flinders Street. If you would like more information about any of these events, please contact the Transition Support Service or visit www.rch.org. au/transition. You will also find our direct contact details on our website as well as a vast range of resources. We hope you all have a fantastic Easter and that you stay in good health! Until next time, Bec Peters Youth Mentor Transition Support Service Bec.peters@rch.org.au

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Congratulations! 

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New Babies

Support Matters 

 

Congratulations and our very best wishes to all these

 families who have welcomed new babies in recent months.   Aaron & Caroline Ferguson announced the arrival of their    

daughter, HK Bethany, on 9th August 2013. She is a baby sister to Jarred.

Luke & Heather Eacher have welcomed the arrival of their son, HK Benen. He was born on 20th August.

 

Scott & Michelle Boyce have announced the birth of another  son, HK Levi, on 4th October. He is a little brother to Tyler,  Kaeleigh and HK Ryder.

Dave & Peta Prain have welcomed their daughter, HK Amy, born 13th November 2013. She is a little sister to Riley.

 

Tim Easton & Janine West proudly announced that their son,   HK Parker, arrived on 26th November 2013.

 Justin Bergles & Sharon Slow have announced the arrival of     

their daughter HK Shae, born on 11th December 2013. She  is a sister to HK Kimberley, Dylan, Brock, Dakota and HK Phoenix. Ray & Christina Ades have welcomed their new daughter, HK Crystal on 18th December. She is a baby sister to Cody, Zoey, Kyra-Lee, Tamara-Lee, Brock and Riley.

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Lisa Dekeling & Shane Hack welcome to the world Ana  Catharina, born 10th January. Much adored sibling to HK Eli,  Zina, Zanthea, Zara and Zoe.

 We also send congratulations to Lisa & Shane, as they  recently became grandparents for the first time, and to Baby  Ana, who became an aunt at 6 weeks old! 

Sarah & Manny Vogiagis have announced the birth of their  son, Anthony Roy. He was born on 14th January and HK Leo   is his proud big brother.

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Benjamin Schuetz & Kristin Gerbing have announced the arrival of their new son, HK Kobe, born on 19th January. Roderick Attard & Melissa Levey have welcomed their son, HK Riley, born on 5th February 2014.

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 Nicole and Deon Mackay have proudly announced the arrival        

of their son Oliver, born on 27th February. He is a brother to HK Shelby-Anne.  Mark & Irene Gregson have announced the arrival of their baby daughter, HK Quorra, born on 28th February 2014. 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.

Happy Birthday!

A very ‘Happy Birthda y’ to all the heart children and their fam ily members celebrating birthdays during Autumn! 14

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HeartKids Support Programs

HeartKids is proud to announce an exciting new development with regards to our Support Program structure. The new structure allows for the expansion of our services by providing a clear focus into various areas of our work. We have essentially taken the details of everything we do and have divided it into six different areas. The Board has endorsed this new approach, which is still being fine-tuned, to allow the programs to be progressively introduced into our communications, activities and collateral over the coming months. This new structure will change the way in which we present our work to the community and better communicate the work of HeartKids. It will allow us to more easily identify the role of each category in our organisation, enable better planning and in turn, support funding opportunities. The following is an outline of the six new categories. The details are still being worked on. We will be progressively launching the categories when they are finalised, at major functions in the future and through our communication channels.

HEARTKIDS CONNECTS PROGRAM • Family Matching • Fun and Networking • Family and Teen camps • HeartKids Parents/Carers • HeartKids Siblings • Heart Angels • Christmas Party HEARTKIDS OUTREACH PROGRAM • Regional Support • Tasmanian Support • Awareness Building • Information and Education • Virtual Support HEARTKIDS FOR LIFE PROGRAM • Ante Natal • School Starters • Transition • Research HEARTKIDS IN HOSPITAL PROGRAM • Accommodation and Crisis Support • Communication and Orientation • Parent Consumables • Grief / Bereavement Support

HEARTKIDS WELLNESS PROGRAM • Respite Support • In Hospital Morning Teas • Day Trips HEARTKIDS INSPIRES PROGRAM • Youth Ambassadors • Ambassadors • Speakers


Hospital Happenings Australian College of Massage Students from the Australian College of Massage attended our morning tea on 13th February. Our families were pampered with seated massages which they thoroughly enjoyed. Even the clown doctors took the opportunity to enjoy some relaxation time! Thank you so much to the Australian College of Massage for your ongoing support.

Introducing New Koala Ward 'NUM'

Hello, my name is Ashley. I am the new Nurse Unit Manager (NUM) on the Koala Ward at The Royal Children’s Hospital. I have been a Nurse for seven years at The Royal Children’s Hospital in Rosella, the Paediatric Intensive Care Unit, where I held the position as an Associate Nurse Unit Manager and ECMO nurse. I have completed a Master’s Degree in Advanced Practice Nursing at Melbourne University and my keen interest area is Congenital Heart Disease. I have travelled with the International Children's Heart Foundation to the Ukraine to complete a cardiac surgery teaching program. I am a devoted Western Bulldogs member, and I also participate in triathlon and adventure racing in my spare time.

Brochure Updated

Bake Boss Delicious Donation

HeartKids funded the production and printing of an updated 'Cardiac catheterisation and/ or electrophysiology' brochure to explain the procedures to patients and families.

This awesome Lightning McQueen cake was kindly donated by our friends at Bake Boss and delivered by Sweet Treasures BY Vanessa. Our patients, families (and nurses) on Koala ward loved it!

RCH Morning Teas

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

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

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

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Reflections RCH Family Bereavement Services The death of a child brings a profound grief. The child’s family and community will be affected in unique and enduring ways. The experience of grief may be unsettling and isolating. As families who are bereaved find ways of living with their loss and the changes it brings, additional resources may be helpful to them. The Family Bereavement Support Program of the Social Work Department, The Royal Children’s Hospital, has for many years supported families who are bereaved. The program offers monthly evening parent support groups and annual sibling bereavement support groups. These meetings are held at the hospital. The parent group meets in the Ella Latham Meeting Room on the Ground floor. The program also offers bereavement counselling, referrals to specialist community support services, education, information and support to hospital staff about bereavement issues and publishes a monthly newsletter. Together with the RCH Chaplaincy, an Annual Memorial Service is also conducted. For further information about the program, please contact the Coordinator, Family Bereavement Support Program, on: (03) 9345 6111. Article supplied by RCH Family Bereavement Services

A parent holds their child's hand a while but their heart forever

Photo courtesy of Tuesday's Child

Photography and the Gleboff-Barker

family

We are creating a Bereavement sec tion on our website. If you would like to share your heart angel’s story or have any sug gestions about what should be included, plea se email tracy.stanley@heartkids.org .au

In loving memory of Coco du Chateau 11th June 2011 17th December 2013

Keep Me in Your Heart by Warren Zevon Shadows are falling and I'm running out of breath Keep me in your heart for a while If I leave you it doesn't mean I love you any less Keep me in your heart for a while When you get up in the morning and you see that crazy sun Keep me in your heart for a while

In loving memory of Oskar Charlie Dobell 26th November 2013 is now with the Angels. Our precious little baby boy who & forever loved. Taken too early, forever missed cuddle you for eternity. Sweet dreams little man, till we big sister Alira. Love always, Mummy, Daddy and xxx ooo

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Sometimes when you're doing simple things around the house Maybe you'll think of me and smile You know I'm tied to you like the buttons on your blouse Keep me in your heart for a while Hold me in your thoughts, Take me to your dreams Touch me as I fall into view When the winter comes keep the fire lit And I will be right next to you


Reflections Grief Information Sheets The Australian Centre for Grief and Bereavement has released a new suite of grief information sheets. The double-sided, A4 handouts are designed to assist our understanding of the grief experience by providing basic information and helpful tips. They are a useful resource for those experiencing grief and those who are supporting someone who is grieving. Topics include: • About Grief • How to Help Someone Who is Grieving • Grief, Anniversaries and Significant Occasions • Grief and Children (Pre-school aged, five and under) • Grief and Children (Primary School aged, 6-12)

The information sheets are available to download from The Australian Centre for Grief and Bereavement website - go to www.grief.org.au/resources and click on “Grief Information Sheets”

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

Birth Dates Kiera Ziegenhardt 2nd March 2010 Finn Adair 4th March 2006 Eli Thomson 7th March 2012 Thomasina Brasier 8th March 2012 Stacey Pye 18th March 1994 Portia Grimbos 22nd March 2010 Adem Urban 23rd March 2013 Bryce McCartney 25th March 2011 Matilda Harrison 26th March 2009 Noah Bannister 29th March 2004 Mary O'Keefe 1st April 2005 Xavier Samu 3rd April 2002 Emily Cook 9th April 1994 Daniel Kabrovski 19th April 2000 Darcy Bartlett 5th May 1992 Sarah Inkster 10th May 1992 Asha McNamara 16th May 2011 Raphaela Perrin 19th May 2010 Cameron Varro 30th May 2010

Anniversary Dates

In loving memory of Levi Carlton Ashley McCormack 17th February 2004 - 14th February 2014 Levi was called Home on the Day of Hearts: Valentines Day, and International CHD Awareness Day. away peacefully with his family by his side. passed He "What is this thing that men call death, This quiet passing in the night?

Matilda Harrison 1st March 2011 Paige Berry 19th March 2012 Eli Thomson 30th March 2012 Emily Cook 1st April 1999 Noah Bannister 7th April 2004 Cameron Varro 10th April 2011 Hope West 12th April 2013 Jonathan McGrath 13th April 2008 Eve Higgins 14th April 2013 Stacey Pye 17th April 2007 Max Barker 27th April 2008 Ethan Hanley 28th April 2010 Portia Grimbos 30th April 2010 Darcy Bartlett 30th April 2009 Jessica El Hassan 4th May 2012 Bryce McCartney 19th May 2011 Amy Dawson 20th May 2010 Bryce Ibbs 25th May 2004 Mia Campbell 26th May 2010 Stephen Buckman 27th May 2010

'Tis not the end, but genesis Of better worlds and greater light." - Gordon B. Hinckley, LDS Prophet

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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Branch News 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 follow us on Facebook or watch the branch news on our website for event dates: http://heartkidsvic.tas.org.au/our/support/Branch Network

Tullamarine

Branch Coordinator News Two of our members have recently retired from being a Branch Coordinator. On behalf of all the families they have supported, we thank Gail McFarlane for sharing the role for 5 years at Burnie, and Lynette McCoullough for 12 years as Coordinator at Tullamarine. We are delighted to be introducing four new Coordinators to you. Please read about them below and you can find their contact details on the back page.

Wonthaggi

Hi, my name is Adele and I am very happy and excited to take over the role of Tullamarine Branch Coordinator. I will endeavour to continue to offer a monthly morning tea for local HeartKids families, where we can come together and offer peer support and friendship. My husband Simon and I have two children; Christiano (our Heart Child), 3.5 years old and Lina, 20 months old. Christiano has Tetralogy of Fallot (TOF) with an Absent Pulmonary Valve and had open heart corrective surgery at 6 months of age. Whilst he will require further surgery in the future to replace his conduit valve, at present he is a happy, energetic and very talkative 3 year old, who loves his little sister Lina, and all of our family and friends enormously. HeartKids is an organisation close to our hearts and I am looking forward to catching up with some new and existing HeartKids families at our next Tullamarine Morning Tea. Please check the Events Calendar on the website for dates for our catchups, which are held at Jump n’ Jiggle Tullamarine (Unit 7 - 217 Mickleham Road, Tullamarine). If you live in or around the area, I hope to see you soon.

Melton I’m Lauren and my husband’s name is Mark. We have three daughters. Makayla 6, Alexis 4 and Ava 2. Makayla is our heart child and was born on the 9th December, 2007 at the Royal Women’s Hospital, Melbourne. We discovered that we were going to have a heart child when I was 20 weeks pregnant. Makayla has a Double inlet left ventricle, VSD, Transposition of the Great Arteries and Hypoplastic right heart. She had her 1st open heart surgery at 17 days old, her 2nd at 10 months and her 3rd at 4 years old. Due to Makayla not being able to walk or play much before her third open heart surgery, it was decided that she should do two years of 4 year old kinder. She has really blossomed and has started Prep this year. Makayla’s photo is on the front of the HeartKids brochure. I am honored to be asked to be the new HeartKids Branch Coordinator for Melton. I am really looking forward to meeting families in the area.

The Event Calendar can be found on our website: www.heartkidsvictas.org.au under Latest News

My name is Erin Howell and I’m pleased to be the new contact for the Wonthaggi branch. My son Harry was born in 2007 with pulmonary atresia with VSD. So far, he has undergone 2 heart surgeries with more to come. I know the importance of having support around you and the value of talking to other families that have experienced some or all that you may have been through. I’m very much looking forward to meeting heart kids and their families in our area for catch ups.

Point Cook Hi. My name is Karen and I’m the mother to a very special boy. He's a heart child. They tell you that being a parent is probably the hardest thing you’ll ever do, and that nothing can prepare you for it. This is even more true when you are parent to a heart child, or any other child with a health condition. There are certain aspects and trials that most probably expect as a parent, but none of these include the amount of tears, heartache, hours spent bedside, medications, hospital visits, sleepless nights, lifestyle restrictions, emotional turmoil, feeding tubes, and medical complications that those with a heart child have to endure. Whether they are your first, second or fourth child, it is a journey that affects the whole family, and we all have our own variations of trials and tribulations to face and overcome. Most of these precious children need monitoring, intervention or ongoing treatments/ repairs/replacements, so their stories will be ones of length. While extended family members, friends and colleagues are likely to express concern, interest and understanding, none will truly understand what we parents and siblings go through emotionally, during not just the difficult times, but while this (often) hidden disease hangs like a shadow in our lives. I will soon be starting a new Point Cook branch for HeartKids families, where we can foster a community of support and understanding for ourselves (parents & partners), siblings, anyone else wishing to attend, and our brave warriors, the Heart Kids and Heart Angels. Whether you come for conversation, coffee or just to get out of the house, I hope you can help me give these morning teas a bright future.


Tasmania News Save the Date: A Family Get-Together in the School Holidays

Date: Sunday 27th April Time: at 2.00 pm Venue: the Play Ground at Anzac Park, Ulverstone All welcome! If the weather is wet, we can meet at McDonalds which is close by. Please contact Claire on 0408 351 661 with any queries.

Devonport Trikids Event HeartKids was the charity chosen to benefit from the Trikids event held on Sunday 2nd March at the Devonport Bluff, as part of the Devonport Triathlon. We had a great day selling cupcakes (donated by The Cake Angels) and cold drinks to the crowd as they gathered to watch the children participate in the children’s triathlon. We were also able to successfully raise awareness of CHD and the work of HeartKids throughout the day - handing out brochures and balloons and luckily getting a continuous plug from the guy on the loudspeaker! Thanks to all those who kindly came together on the day to support this successful event.

Chain Reaction Chain Reaction is the Ultimate Corporate Bike Challenge that raises money for sick children by challenging senior executives who have a passion for cycling and an awareness of their corporate and social responsibilities, to ride a 1,000 kilometre plus course in 7 days.

This year, riders of the New South Wales event ventured down to Tasmania to cycle a truly challenging course. Riders cycled through some majestic areas such as Swansea, Cradle Mountain and Tarraleah, whilst also taking on some gruelling terrain such as the iconic Mount Wellington climb and the famous 99 Bends Road. This year the aim of Chain Reaction’s 29 riders was to raise over $600,000 to help the Victor Chang Cardiac Research Institute undertake significant research into finding the cause of congenital heart disease. This is research close to our heart, and HeartKids was extremely pleased and proud to be a minor charity partner for the Challenge. One of our families joined the challenge participants for dinner. Jodie Beveridge shared her family’s CHD journey before the riders tackled the Cradle Mountain leg of the Challenge – 149km distance and 2,492m of climbing with a total of six hours in the saddle. A big thank you to Jodie for speaking, as their story had a big impact on the riders. This quote is from the Challenge blog. “We knew that our ride today would be difficult. We were told about the gravity of today’s challenge, but after listening to Jodie’s story last night, we knew that no matter how much pain our legs were in, it was nothing compared to what Jodie, Fiona and Gavin face every day. Inspiring!”

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HeartKids Families ... KidsTown Picnic Day

On Sunday 30th March, SPC Ardmona KidsTown was again occupied by a number of heart children, their families and friends at the annual picnic coordinated by Kiwanis Division 7. All the facilities of KidsTown, which is located near Shepparton, excited our children, including climbing equipment, slides, flying fox and miniature train rides. Other activities such as face painting, balloon sculptures, nail painting, tattoos, plate painting and sand castle making kept them busy. Children were delighted when the Kiwanis club members gave them gift bags filled with local goodies as they arrived at the venue. The generous volunteers of Kiwanis Division 7 provided a tasty barbecue and offered cold drinks at lunchtime. We appreciate Kiwanis Divison 7 offering this day to our members and in particular, we thank Cheryl Alexander for being the coordinator. We always value Ted Kitto's support and it was nice to have John Bromilow, Kiwanis Australia District Governor, join us as well. Thanks to Crackles the Clown and the KidsTown staff for helping us have a great day!

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.... Enjoying Activities! Carn the Kids that on the way home he told his carer he was thinking about going back to school and getting training After a long day on the his apprenticeship.” Todd lan, track, Jamie Macmil and on McMah Scott in, Goldste Some of the youngsters had Shaun Atley spent Wednesday never been to a game of afternoon putting smiles on the football, until Carn the Kids and faces of kids. North Melbourne provided a 45 for special opportunity. clinic a on The players put Carn lan’s LeaseP of part as children “It’s a credit to the club, because the Kids program – Macmillan the players run the whole thing was delighted to play his part in a fantastically, from the football fantastic initiative. clinic to the tour, to them their g interacting and knowing the kids’ enjoyin kids the “To see all “They always have a great time and it’s by the end of it,” Hughes always names is much so club the at time really satisfying to give back to them.” added. rewarding for the guys,” he told NMFC.com.au. “Over the years we’ve had kids give to g satisfyin really it’s and time but now after experiencing an great clubs, a “They always have who barracked for other not It’s for. l footbal play we like this, they’ve switched to what nce ber remem experie al and person them back to up close and rne. Melbou just about playing games and training - the young fans are just North

Doing it for the kids

as important.” LeasePlan’s Carn the Kids, in partnership with North Melbourne, helps provide fun experiences for children involved in organisations such as Camp Quality, HeartKids, Mirabel, The CREATE Foundation and Variety. The players make sure the time the kids spend at Aegis Park is unforgettable. “A small thing like a two hour footy clinic really does have a positive impact on these kids’ lives,” Belinda Hughes from LeasePlan said. “A couple of years ago we had a 14-year-old boy in foster care who had dropped out of school come along to this football clinic. He had such a great time with the players and other kids

“For some of the families, getting the chance to head along to the football is a big deal. They get to spend time with likeminded kids as well, so they feel like they’re not alone. They’re not the only ones who are in foster care or have a sick brother or sister in hospital.” Carn the Kids has entertained more than 23,000 kids and carers at fun days out across the country for the past 11 years. This season, North Melbourne and Carn the Kids will host five memorable days at the footy in Melbourne, Hobart and Adelaide. Our thanks to North Melbourne Football Club and LeasePlan for providing this article.

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Thank you for your recent gifts... Ashton, Leah Atkinson, Laurelle AussieCoupes.net Austin, Monica Ballarat Rotary Ballieu, Richard & Jane Biggin & Scott Blake's Million Smiles Bodinnar, Michelle Bowens Campbell, Emmeline Caruso, Diana & Domenic Casey, Gavin Catalan, Meagan Catania, Lisa Cater, Shae CBA Staff Social and Charity Club Compston, Julie-anne Connery, Lisa Cool, Alistair Dalton, Delyce Dame Phyllis Frost Centre Drew, Tammy du Chateau, Greg Ebery, Kathryn Elsayed, Samira

Equity Trustees Limited Estate of Mr Stan Brown Evans, Mick Featherston, Kevin & Beryl Federation Centres • Brandon Park • Cranbourne • Karingal Hub & Star Zone • Mildura • Mornington Central • Oakleigh • Sunshine Market Place • The Glen • Victoria Gardens Floreancig, Viviana Foster, Amanda Freemasons Victoria UGLV Benevolence Fund Gageler, Carla Gardiner, James Gear, John Geelong FX-HZ Holden Car Club Giblin, Lisa Gibson, Elizabeth Gilmore, Craig Gluyas, Claire

Golden Plains Shire Council Gonzalez , William Grant Thornton Gruber, Maria Guilford Young College Hall, Matthew Hansen, Chris Helwani, Helen, James and family Henderson, Emily IKEA Kiri & Janahan Johnstone, Tanya Kay, David KemSigns King, Denis & Anne Marie LeasePlan McCleary, Miss McMahon, Narelle Mekhael, Emmanuel Melbourne Shrine Club Michielin, Louisa & Adam Miller, Timothy Moran, John Mueller, Susan Nelson, Matt Nester, Sophie

Northcote Pots Australia P/L Novello, Matthew Ole, Erin Parkmore Poultry Pasco Construction Solutions Perrin Consulting Walsh, Andrew Philip Chun and Associates Pty Ltd Precious Hearts Price, Matthew Prouds Jewellers Quinane, Bianca Ray, Paul Renfrew, Ronald & Kathleen Rhodes, Joanna Rodrigues, Peter Rombotis, John & Emma Rose St Café Rosebud Country Club Ryan, Michelle Marion Jenny David Schofield, Robert Scott, Michelle Signed and Framed Sluggett, Nickylou

Smith, Kylie Specsavers - Altona Meadows Tang, Peter & Joyce Tasdom P/L Tasmanian Police Charity Trust Terrill, Mark The Cake Angels The Geelong Lodge of Unity and Prudence No 5 Thomas, Fr. Donald Tierney, Sianan Trager, John Trybooking Walsh, Andrew Wodonga City Council Yates, Nic Z Transport Group Zerna, Graeme Memorial Donations for: • Blake Gordon-Cooke • Coco Du Chateau • Ollie Cristiano • Stephanie Williams • Tina Nelson

Financial contributions over $500 are acknowledged in this column.

Entertainment Books 2014-2015

We are pleased to announce that we are selling the new 2014- 2015 Entertainment™ Books as a fund-raiser for HeartKids Victoria/Tasma nia and this year you have a choice – the Entertainment™ Book or the NEW Enterta inment™ Digital Membership! Entertainment™ Memberships are packed with hundreds of up-to-50%-off and 2-for-1 offers for the best restaurants, cafes, attractions, hotel accommodation, travel and much more!

The traditional Entertainment™ Book Membership - only $65 and you will receive $20,000 worth of valuable offers which are valid until 1 June 2015. The new Entertainment™ Digital Membership - only $65 puts the value of the Entertainment™ Book in your Apple or Android device. Search for businesses, show your phone to redeem and keep track of your savings. Please support us and order your Entertainment™ Membership on-line : https://www.entertainmentbook.com.au/orderbooks/180y947 You can order books for anywhere in Australia and 20% comes to HeartKids Victoria /Tasmania.

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Australia Day Fundraiser

Mia, Sienna and Paris Grimbos set up a stall on Australia Day selling lamingtons and honey joys raising $101.90 for HeartKids. Here’s a photo of Mia and Sienna presenting Tracy Stanley with the proceeds from their fundraising.


Sponsors and Supporters Victorian Partners:

National Supporters: Founding Sponsor

Principal Partner

Major Partners

Foundation Partner

Corporate Supporters

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Diary Dates

Friday Appeal

od iday 18 April - Go  Fr show ril - Razzamatazz

Saturday 26 Ap  of Nights,  Friday 9 May - HeartKids Nightilor Rotary Clubs Ke llamarine &  sponsored by Tu cean  18 May - Great O ay nd Su d an 17 Saturday  arathon s ilie  Road M fam ult Ad g un - Lunch for Yo Saturday 31 May   Saturday 7 June - An Evening for Tina t Gatsby Gala  - HeartKids Grea  Friday 20 June PJs Run  Sunday 27 July Day  st - HK Education gu Au 2 ay rd tu Sa 'n Day  ntan Registry Educ  Sun 3 August - ANZ Fo ily Camp September - Fam  Weekend 19-21 arathon M  e rn ou elb M er Sunday 12 Octob go

eck inside or these events ch For more about .au rg victas.o 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 Point Cook Karen Howard 0413 023 557 pobox2611@gmail.com Tullamarine Adele Luca 0408 312 662 adeledichiera@hotmail.com Wantirna Janita Felici 0422 976 024 janitafelici@gmail.com REGIONAL BRANCHES VICTORIA Albury/Wodonga April Schubert 0407 551 967 (02) 6056 6448 april.schubert@bigpond.com Bairnsdale Caroline Foard 0438 928 821 cfoardy@yahoo.com

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/Tasmania

www.heartkidsvictas.org.au

 

Contact Details Ballarat Rohini Dobell 0407 851 648 rohisew@hotmail.com Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 goliathgroup@bigpond.com

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

Cobram Bianca Quinane 0419 674 408 biancz1979@hotmail.com

Wonthaggi Erin Howell 0431 702 863 howells8@bigpond.com

Echuca/Moama Tracey Hard 0438 962 056 tracnsteve@bigpond.com

TASMANIA Burnie Amanda Riley 0448 330 611 amanda.riley1@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

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 SPECIAL INTEREST GROUPS 22q11 Audrey Cater (03) 9394 7965 0420 500 905 audrey.cater@bigpond.com BEREAVED FAMILIES EMAIL SUPPORT http://www.hearts-of-hope.org/ support/bereavment/intro.htm CARDIOMYOPATHY ASSN of AUST. Website: www.cmaa.org.au/ DOWN SYNDROME Sam Jackson 0404 596 356 mummee1973@optusnet.com.au

EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 kjsrms@bigpond.com hearts4heart - Support for Adults with Heart Disease Tanya Hall 0426 240 636 info@hearts4heart.net.au hearts4heart.net.au 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 KABUKI SYNDROME Stacey McKiernan (03) 5275 1542 stacey@sakks.org Website: www.sakks.org KAWASAKI DISEASE Shirley Mates (03) 9894 1257 info@kdfoundation.org.au Website: www.kdfoundation.org.au LONG QT SYNDROME (LQTS) Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids.org.au www.sads.org.au or www.sads.org.uk/ MULTIPLE BIRTHS April Schubert (02) 6056 6448 0407 551 967 april.schubert@bigpond.com MUSLIM FAMILIES Lucy (Fatima) Hussain 0430 738 820 OVER 18’s Erin Cervelli (03) 9513 9030 PACEMAKERS Mandy Tichelaar (03) 9728 6984


2014 autumn heartkids victoria tasmania magazine