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Autumn 2013

Quarterly Magazine for Victoria and Tasmania

Volume 23 Issue 1

* * *

R  esearch Grants-In-Aid Teen Camp 2013 F  ebruary Awareness Month

support

awareness

research

advocacy


Matters of the Heart Chief Executive Officer Recently we said goodbye to two of our staff, Amy Emmett, our Administrative Assistant, and Sarah Currie, our Office Manager. Many of you would have spoken to Amy and Sarah when calling the office or arranging events and fundraisers and experienced first-hand how happy, friendly and committed they were to helping HeartKids be the best organisation we could in providing assistance to our special children and their families. Amy has decided to do further study and train in events management and Sarah has moved interstate with her partner who was transferred in his work. We will miss them greatly and wish them both all the very best in their new endeavours. Since their departure we have had Sandra Zlatanovski join as our new Office Manager and Bea Tomlin in the role of Events and Fundraising Manager. I extend a very warm welcome to Sandra and Bea and I am sure you will all enjoy working with them as we in the HeartKids team already do. In this edition of the magazine you will once again see that we feature a number of events and fundraisers that have occurred as well as many that are up-coming. I would encourage everybody to become involved in helping us conduct successful events and fundraisers. You can do this as an attendee/participant, a volunteer or if you have an idea for a fundraiser, contact Bea and let’s see if we can help you develop it into something you will be proud of. I would like to acknowledge HeartKids Australia for again running a great Teen Camp. We have an article in this edition and it is clear how much it means to the teens who attend. We really believe in the value that these camps deliver to the children and I would like to remind you we will be conducting our Candlebark Family Camp and Tween camp later in the year. Keep an eye out for dates and get your name down when the enrolments open. HeartKids Australia also announced the Research Grants-In-Aid Award recipients for 2013. HeartKids Victoria contributes towards these research grants on your behalf and it was fantastic to see three Victorian projects successful. As an extension to the Research Grants I would like to thank our volunteers who are helping A/Professor d’Udekem with his Fontan Registry Project. It is truly amazing how people are prepared to give up their own time to help out with this important work. In closing, as always, I would like to thank everybody who maintains an involvement in HeartKids. We enjoy what we do very much, but our February Awareness Month activities reminded me that we cannot achieve much without the support of our members, donors, volunteers and sponsors. Please enjoy this Autumn edition of the HeartKids Vic/ Tas Magazine.

Terry Hopkins CEO HeartKids Victoria

g at Teen Camp Front cover: Fun on the Giant Swin information for this edition. Thanks to all who sent photos and - send to: Contributions are always welcome rg.au ds.o heartkids@heartki s. ts On Call for printing our magazine Thanks to Fuji Xerox and Documen processing of some digital images. Thanks to Gordon Patullo for post

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Our Team HeartKids Victoria Board 2012-2013 * Chairperson: Phil Riggio * Vice Chairperson: Natalie Palmer * Treasurer: Joseph Eid * Secretary: Melissa Karatjas * General Board Members: Toni Planinsek Chris Palmer Terry Hopkins Tania Tytherleigh Ashley Koenig Wayne Crofts

HeartKids Victoria Employees * Chief Executive Officer Terry Hopkins 0478 085 480 terry.hopkins@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 * Support Events Coordinator Lynette McCoullough lynette.mccoullough@heartkids.org.au * Events & Fundraising Manager Bea Tomlin bea.tomlin@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

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 Victoria. ledgement to HeartKids reprinted with an acknow ine do not imply published in this magaz Please note that articles HeartKids Victoria. 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

HeartKids Victoria proud ly supports children wit h heart disease and their families throughout Tas mania. For Tasmanian enquirie s - please refer to the ba ck page for our Tasmanian Branch Coordinators’ contact de tails.


Coming Events Glow Run

Date: Saturday 20th April Time: arrive 6pm for 7.30pm start Venue: Birrarung Marr, adjacent to Federation Square Join the HeartKids Victoria team and be a part of this year’s Glow Run event. Light up the night over a 5km glow course, dance a while in one of the Glow Zones, or just let the DJ’s spur you on to the finish line. So register now, plan your outfit at www.glowrun.com.au and then set up your everyday hero page: http://www.everydayhero.com.au/event/HeartKids_ Victoria_Glow_Run_team

Rainbow Fun Run

Date: Sunday 21st April Time: Registration 8.30am-9.15am; Run 9.30am sharp You must pre-register the number of participants via email: hoffys_burpee_challenge@hotmail.com Venue: Cardinia Reservoir Park, Emerald Walk, Run, Jog, Crawl - 5km and 10km options Cost: $25 Adult, $10 per Child (under 12) $60 Family (2 Adults plus your kids) Proceeds of this event will be donated to HeartKids. “Walk in wearing white, Walk out looking like a Rainbow”

HeartKids’ Night of Nights See poster on this page

Date/Time: Friday 17th May, 7.00pm for 7.30pm start Venue: Ultima Receptions Cnr Keilor Park Drive & Ely Court, Keilor. Book via John Cendo: lighting@mirabella.com.au

Razzamatazz (Variety Show)

Date: Saturday 18th May Time: 2pm; the show is about 60 minutes, with no interval. Venue: Festival Hall, 300 Dudley St, West Melbourne With a mix of circus, magic, comedy and dazzling dancers, Razzamatazz is a variety show that is fun for the entire family. HeartKids will have free tickets to this show for our families who have a heart child or heart angel. Please register for tickets on: www.trybooking.com/cmxm For further details please contact Lynette on lynette. mccoullough@heartkids.org.au or 0418 548 879, or see: http://razzamatazz.net.au 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.

In This Issue 2 3-4 4 5

Matters of the Heart Coming Events Events and Fundraisers

Research Grants-In-Aid Awards 2013 6-7 Teen Camp 8-9 ‘To Logan From Mummy & Daddy’ 10 Mother’s Day Special Offers 10 New Babies 11 Reaching Milestones 12 Hospital Happenings 13 RCH Cardiology Clinic 14-15 HeartKids Awareness Month 16 Tasmania News 2 17 Branch News 18 HeartKids Australia News 18 Carn the Kids Soccer 19 Reflections 20-22 Donations and Fundraising 22 Zaidee’s School Education Program 24 Diary Dates

HEART KIDS’

NIGHT OF NIGHTS

FRIDAy 17TH MAy 7:00 FOR 7:30 START

AT THE uLTIMA FEATuRING

ELVIS TRIBuTE ARTIST

MARK ANDREW

AND HIS SENSATIONAL SHOWGIRLS

Heartfelt Golfing Fundraising Event Date/Time: Sunday 19th May, 11am-4pm Venue: Malvern Valley Golf Course Address: 1 Golfers Drive Malvern East

Come and join us for a BBQ and Music at this event which HeartKids is proudly supporting. We will be auctioning a signed cricket bat and holding a raffle at 3pm. The bat has been signed by Mitchell Johnson, Shane Watson, George Bailey, Shaun Marsh, Xavier Doherty and James Faulkner. Art & crafts area for kids as well as clothing stalls. Tickets include BBQ and admission to the Event. Please book early, via http://www.trybooking.com/COJJ Cost: Adults $12.50, Children Under 13 $10.00 Family (2 Adults & 2 Children) $40.00 Golf will be available, separately to tickets for the Event on (03) 8290-4020. Again please book early.

• LiVE AUCTioNS • SiLENT AUCTioNS • 3-CoURSE MEAL • RAFFLES & MoRE

Rotary Club of Tullamarine District 9800 Victoria Australia

HOSTED By GEORGE DONIKIAN

uLTIMA RECEPTION CENTRE CNR KEILOR PARK DRIVE & ELy CoURT, KEiLoR. TICKETS $100 EACH. DRESS CODE: EVENiNg wEAR, DRESS TO IMPRESS.

BOOK NOW! EMAIL JOHN CENDO LIGHTING@MIRABELLA.COM.Au ALL MONEy TO HEART KIDS!

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Events and Fundraisers Coming Events Continued...

Informal Lunch for Parents & over 16’s

Date/Time: Saturday 25th May, 11am-2pm Venue: Doncaster Pancake Parlour 550 Doncaster Rd, Doncaster Get-Together for Parents & Young Heart Adults aged 16 & over. Meals at your own cost. Parents and their Young Adults are encouraged to attend together but welcome to attend on their own. Heart Angel parents are most welcome. RSVP & for more details: margaret.patullo@heartkids.org.au

Who will be Magnificent Miss 2013?

Date/Time: Friday 31st May 8.00pm - 11.30pm Venue: The Palms at Crown, Melbourne For the first time ever Emmanuel Ammo Hairdressing, together with L’Oreal Professionnel will be holding a fashion show styled event and you’re invited. So get your friends together for a night of fashion and fun, and inspiration at the inaugural Magnificent Miss Show! Get your floor seats before it’s too late! Tickets are available at emmanuel ammo hairdressing, Shop 3B, 199 Toorak Road, South Yarra or at: ticketek.com Cost: $69 per person Also receive a $50 voucher from emmanuel ammo hairdressing and many more gifts from all of our sponsors! There are 45 magnificent entrants, come and vote for your favorite one. Together we are supporting HeartKids. From the team at Magnificent Miss & emmanuel ammo hairdressing!

HeartKids Christmas in July

Date: Saturday 20th July, 6pm till late  oltan’ Pepper Restaurant Address: S Shop 11, 106-112 Gap Road, Sunbury Vic Cost: $50.00 for adults (three course dinner) and $15 for kids (2 course dinner with a drink) With a DJ and Santa, it’s sure to be a fun night so bring the kids along to this child friendly event and enjoy a three course dinner and all the Christmas trimmings. Tickets from: http://www.trybooking.com/CMNH For alternate payment options call Emma on 0431 285 010, Amy on 0411 552 264 or phone HeartKids Office (03) 9329 0446.

Skydive for HeartKids

Saturday 26th October (10am - 4pm) at Barwon Heads Aero Club, with Melbourne Skydive Centre. 1. You can jump from a variety of heights, right up to 14,000ft. Amy Emmett did her first jump there in February. She said, “It was an amazing experience. The team are very professional and I can highly recommend them.” 2. Here’s how you can get involved: Check out http://www.melbourneskydivecentre.com.au for more information 3. To confirm your place in the HeartKids team, pay a nonrefundable deposit of $110.00 on our everyday hero page on the following link, http://www.everydayhero.com.au/ Skydive_for_HeartKids, with password: heartkids 4. Share the link to family members and friends, to gather donations. Once your donations reach $1000.00 - your jump is FREE! So jump for us, spread the word and support HeartKids!

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A New Fundraising Initiative with The Gift Tag Boutique HeartKids Victoria and the team at The Gift Tag Boutique have combined to promote this new fundraising opportunity. These gift tags are cut in different shapes such as trucks, ballerinas, daisies, hearts, toadstools and more. They are brightly coloured and sold in packs of two for just $2.00 or six tags for $5.00. Get involved with this fun and funky fundraiser by buying them for yourself or become the rep for your school or business and make a really big contribution to HeartKids. Look for an order form on our website, under ‘Get Involved, Fundraising’. Please print and return it to The Gift Tag Boutique and check out www.gifttags.com.au to find out more about other fundraising options with The Gift Tag Boutique.

Entertainment Books 2013/2014 We are pleased to announce that we are selling the new 2013- 2014 Entertainment™ Books as a fund-raiser for HeartKids Victoria. Entertainment™ Books 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 new Book is only $65, and you’ll receive over $15,000 worth of valuable offers, so you can choose what you want to do and when you want to do it up until 1 June 2014. Entertainment™ Books feature valuable up-to-50%-off and 2-for-1 offers from many popular local businesses, including: Red Spice Road, The Groove Train, Grill’d, Hoyts, TGI Fridays, KFC, McDonalds, Coles, Sea World, AFL, Caltex, Woolworths, Dan Murphy’s … plus hundreds more! Order on-line https://www.entertainmentbook.com.au/ orderbooks/180y947 or visit our HeartKids website to download an order form.

Heart Kids Victoria have teamed up with Aussie Farmers Direct!

Shop with them and they’ll support our fundraising effort.

?

Wh at’s Nex t

Take up the introdu ctory offer and help Heart Kids Vic reach their fundra ising goals.

AussieFarmers.com.au/Fundraisingoffer AussieFarmers.com.au/Fundraising


HeartKids Research Grants-in-Aid Awards 2013 HeartKids Australia is delighted to announce the research project s to be funded under their Grants-in-Aid program in 2013. The Grants-in-Aid program supports research and research capacity buildin g in congenital and acquired childhood heart disease. HeartKids Australia would like to thank Wilson HTM Foundation, the Founding Partner of this program, and Kiwanis Australia, HeartKids Queensland, HeartKids Victoria and HeartKids Western Australia for their support.

The five research projects to be funded in improved over time. This project 2013 are as follows: will establish a formal process for Principal Investigator: A/Prof Christian assessing neurodevelopmental Brizard outcomes in a cohort of patients Project: Cord blood stem cell function in undergoing care at Queensland Hypoplastic Left Heart Syndrome Babies Paediatric Cardiac Service. In the initial instance two patient groups have been Institution: The Royal Children’s Hospital selected, 1 – patients undergoing (RCH) Melbourne, Murdoch Children’s ECMO, 2 – patients undergoing Research Institute (MCRI). arterial switch or Norwood procedures. Additional Investigators: Dr Salvatore A formal neurodevelopmental clinic Pepe, Dr Ngaire Elwood Pictured at the Awards Presentation: will be established with input from Project Description: Dr Anne Fletcher, HKA Vice Chair; developmental paediatricians, A/Prof Yves d’Udekem; Dr Robert Justo; Babies born with HLHS need immediate physiotherapy, speech therapy, Dr Andrew Edwards; A/Prof Christian life-saving heart surgery (Norwood psychology and the dietetics Brizard; Jann Kingston, HKA CEO procedure) and a series of later operations department. These patients will be as they grow. We aim to boost the assessed at 4 months, 12 months, 2 years and 5 years post intervention. A Nurse Coordinator strength of their heart between operations by applying an will be involved in these clinics to coordinate care and data additional treatment with their own cord blood stem cells collection of this patient cohort. (CBSCs). We have recently demonstrated the efficacy of a new treatment with CBSCs that can be performed during the Principal Investigator: A/Prof Andreas Schibler Norwood operation. This study is to confirm (in greater detail for NHMRC* purposes) that these CBSCs from HLHS babies Project: Predictive role of thromboelastogram on risk for have the same ability and potential for initiating this boost for thrombosis and bleeding on ECLS survival as those CBSCs from normal babies. Institution: Queensland Paediatric Cardiac Service, Mater Children’s Hospital, South Brisbane. Principal Investigator: A/Prof Yves d’Udekem Additional Investigators: Sylvio Provenzano, Emma Haisz Project: Measuring the burden of untreated hypertension Project Description: amongst patients with repaired aortic coarctation Children with severe heart failure before and after open Institution: The Royal Children’s Hospital (RCH) Melbourne, heart surgery often need support for their circulation using Murdoch Children’s Research Institute (MCRI). Extracorporeal Life Support (ECLS) bypass. In order to prevent Additional Investigators: Ms Melissa Lee, A/Prof Michael clotting of the tubing these children are treated with a blood Cheung, Dr Bryn Jones and Prof. Igor Konstantinov thinner. The accurate adjustment of this treatment is very Project Description: difficult and tests currently available are not reliable. In order Coarctation of the aorta is a narrowing of the main blood vessel to gain new insight and improve the blood thinning treatment we aim to correlate current tests with each other and a new requiring surgery soon after birth. Some patients later develop test (thromboelastogram, TEG). We aim to show that TEG hypertension (high blood pressure) and die at a young age. adjustments prevent clotting of the tubing and reduce the We found in our initial pilot study of patients after coarctation need for blood transfusions. repair with hypoplastic (smallish) arch that more than half of them develop hypertension, most of them unnoticed. We want Principal Investigator: Dr Flora Wong to perform fine screening of the blood pressure of all those who have had this operation in order to determine the true Project: Understanding fetal circulation and physiology in incidence of hypertension after coarctation repair. We want to congenital heart disease prevent a major public health issue. Institution: The Ritchie Centre, Monash Institute of Medical Research, Monash University Principal Investigator: Dr Robert Justo Additional Investigators: Dr Andrew Edwards, A/Prof Alex Project: Queensland Paediatric Cardiac Service long term Veldman, Prof. Samuel Menahem, Prof. Dietmar Schranz follow-up program Project Description: Institution: Queensland Paediatric Cardiac Service, Mater Many congenital heart diseases are due to obstruction of blood Children’s Hospital, South Brisbane. flow before birth, resulting in abnormal growth of the fetal Additional Investigators: Prof. Tom Karl, Dr Christian heart, such as the hypoplastic left/right heart syndrome. The Stocker, Dr Honey Heussler project aims to develop new therapies to relieve obstruction Project Description: and restore blood flow before birth, as early treatment for hypoplastic left/right heart syndrome. In the fetal lamb Neurodevelopmental disability is common in children with model, we will access the fetal heart/great vessels by inserting congenital heart disease who are survivors of cardiac surgery. a balloon catheter through the mother’s abdomen under Recent evidence suggests that despite advances in care ultrasound guidance. We will apply balloon dilatation of fetal neurodevelopmental performance has not significantly heart/vessel valves to relieve obstructions, and to assess * NHMRC: National Health and Medical Research Council changes in the fetal blood flow and pressure. 5


2013 Teen Camp

Thanks to all of our new and returning campers and volunteers for making this year’s Teen Camp such a memorable experience. A big thank you as well, to all of the staff from Gundiwindi Lodge, for making all of our campers and volunteers feel so welcome at such short notice. Due to the recent Victorian bushfires, Teen Camp almost did not go ahead. The original location selected for the camp, Rawson Village, in Rawson, was cancelled on the 17th of January, because of bushfires in the local area. HeartKids would like to thank all those other venues and associations, such as the Christian Youth Camps of Victoria, who assisted us in our last minute search for an alternative venue. Campers arrived at Gundiwindi Lodge on Friday afternoon. This year we had campers from each state and territory. It was a very long journey for some, particularly those from Western Australia who had been travelling since 4am. On Saturday the activities program commenced. The giant swing and the flying fox provided a challenge for those who had a fear of heights, while the low ropes course tested everyone’s balance. Other activities such as reptile education and yabbying proved to be an unexpected hit, with campers lining up to pet the turtles and lizards and many enjoying yabby races. Saturday also saw the arrival of the camp ambassador, Dr Michael Toon, who inspired everyone with his speech about his experience as a heart kid. In addition to being a pharmacist, and then studying medicine, Michael, who is now a registrar, has won a bronze medal at the Athens 2004 Olympics for coxing the men’s heavyweight eight rowing team. That night, the much anticipated ‘op-shop ball’ was held in the recreation room, otherwise affectionately known as ‘the nightclub’. There were many wonderful and weird costumes and a great night was had by all.

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Activities continued on Sunday. Campers and volunteers built some impressive huts; one offering was wheelchair accessible while another even had a welcome sign! Some were better than others at bush cooking; many a damper ended up in the ashes or was inedible! On Sunday there was fierce competition at the trivia night held in ‘the nightclub’. Following that, many campers enjoyed time around the campfire toasting marshmallows or preparing for their journey home the following day. After breakfast on Monday morning, campers packed-up their belongings, were picked up or boarded buses to take them to the airport for flights home. Many were tired, but happy to have been reunited with old friends or to have forged new friendships. Teen Camp provided many campers with the knowledge that they aren’t alone; there are lots of heart kids just like them, so while they are at camp they are just ‘regular’ kids. Teen Camp would not have been possible without all of the hard work and effort of our volunteers, thank you! HeartKids really appreciates the time that our volunteers give to attend Teen Camp. The introduction of the role of Camp Champions was a huge success; the Camp Champions acted as great mentors for the campers and have demonstrated their ability to become future Group Leaders. HeartKids would like to acknowledge the generous support of our sponsors, who also make Teen Camp possible: LeasePlan for sponsoring the activities program for all of our campers; Actelion, for sponsoring the travel and accommodation for our volunteers; Device Technologies for supplying the defibrillator for camp; and Bonds for supplying t-shirts for use at camp.


An Insider’s View Teen Leah Askey-Doran writes about this year’s Camp: The weekend we all look forward to finally arrived! After a day of traveling, teen heart kids and supervisors from every state arrived at Gundiwindi Lodge. We reunited with one another and for those who had never met, it felt like they’d known each other a life time. Many of last year’s older campers joined us as camp champions, stepping up to the challenge of being leaders. After we were welcomed and told how the weekend would pan out, we were divided into seven groups. These were the groups we would be in while doing all our activities. A team building exercise that followed helped us to communicate and trust one another. Over the weekend we faced challenges together such as the giant swing, fishing for yabbies, flying fox, archery, hut building, damper making and low ropes. Each of the activities encouraged us to step outside our comfort zone and try new things. We were given plenty of free time to hang out around the camp site, and whether it was jumping on the trampolines, feeding the farm donkey and cows or having a match of ping pong, everyone enjoyed the company of each other and had a blast. The op shop ball saw some very creative outfits shine, as we danced and mingled with each other to music. The quiz night showed the competitive side of our campers as they cheered for their teams. During the camp we all took a moment to reflect on Paige Berry and Shaun Miller, two inspirational campers who passed away last year. We were lucky to have Dr. Michael Toon, the official camp ambassador for 2013 and an inspirational heart kid, speak to us about his journey with CHD. Michael, who studied pharmacy and medicine and is now a Registrar working in the field of cardiology, has also had a unique sporting career. Michael won a bronze medal at the 2004 Olympic games for coxing the men’s heavyweight eight rowing team. He taught us that all the challenges we face in life help shape who we are, and that anything is possible. Overall, camp was inspirational, funny, touching and an opportunity to have teens around us who understand what we go through. The friendships made on camp are some of the strongest we will make and we are all grateful to everyone who makes the camp possible and we are proud to be a part of HeartKids Australia Teen Camp.

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To Logan From Mummy & Daddy

To our dearest Logan We know that you are aware that Mummy and Daddy both love you very much. It has always been that way, right from the minute we found out about you. Things for us had already been difficult, as it took over 3½ years to fall pregnant with you. Despite having medical assistance previously, you ‘occurred’ all on your own, so you were already our little miracle and we were First cuddles with Mummy & Daddy elated. We were told at the 20 week ultrasound there were abnormalities in your heart that would need to be repaired once you were born. The doctors called them a Ventricular Septal Defect (VSD), aortic stenosis and coarctation of the aortic arch. This news came as a shock, but didn’t make us want you any less - it made you even more special. As you grew, it became apparent that with your complications, the VSD was actually helpful, as it allowed good blood flow through your tiny heart as it developed, which avoided one side becoming smaller. On the night you were born, 14 April 2012, Dr Sue Hiscock, our obstetrician, was there with a team of specialists, to see you safely into the world. They watched the heart monitor closely and when you became distressed near the end, she got you out. Mummy held you while Daddy cut the cord, but you were having trouble breathing and in a flash, you were whisked to the side so the doctors and nurses could help you. We each held you for a few precious moments before they took you away to care for you. When we saw you later in the neonatal unit, you had been intubated and your little face and body were covered in tape and tubes. We had barely even seen what you looked like. You were given some medication to keep your ductus arteriosus patent, without which you would not survive. You were just 2½ days old when you underwent your first open heart surgery. Dr Yves d’Udekem and his team performed a Yasui procedure on your heart, which was barely the size of a walnut. It was the longest eight hours of our lives, waiting for the call to tell us we could see you. Amongst other Kiss for good luck, two days old things, Dr d’Udekem

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had joined your pulmonary artery and aorta together and added a new pulmonary artery using gortex conduit. He was pleased with how the operation had gone. We rushed back to your side in ICU and although we couldn’t stay overnight, we barely left your side. At 2.8kg, you were dwarfed and hidden by all the equipment. We held your tiny hand and stroked your head, but were still unable to hold you. You would cry, silently because of the intubator. We knew the pain we were feeling was nothing compared to yours. After what seemed like an eternity and some complications (including a collapsed lung & partially paralysed vocal cords) we were finally able to have our first real cuddle. Ten days we had waited anxiously for this moment. It was unforgettable. You were moved out of ICU and we spent the following weeks watching you slowly get better. Mummy slept at the hospital with you At seven weeks old, Logan had already and diligently been through so much made your milk, even though you were tube fed different fluids. Your Grandmas and Grandpa came from Canberra to meet you and were amazed at what a fighter you were. Bit by bit, dressings, tubes and monitors were removed, revealing a gorgeous little boy. You were almost a month old when we really saw your face for the first time. Mummy met some of the other families at the morning teas HeartKids hold twice a week. Hearing stories similar to ours and sharing some laughs with Tracy, Sherrie and other parents helped provide some comfort and relief. When you were five weeks old, we were finally able to take you home. You still had the nasogastric tube and needed daily ‘hospital at home’ visits. We play nurse every day, giving you medicines, and back then these included six weeks of twice daily injections. Mummy would cry with you, but it was all worth it to have you in our arms. We were a ‘somewhat’ normal family at last. At 3 months old, we went on our first holiday. We drove to Canberra, where all the relatives live, and they were all looking forward to meeting you. However, the day after we arrived, you were a bit off colour, so off to Canberra Hospital for a checkup. You were admitted and diagnosed ration After a second open heart ope with bronchiolitis and old to replace his conduit, 4 months


RSV. There was also bacteria in your blood, a possible indicator of a heart infection. Mummy & Daddy were worried, so you gave them your first smile, as if saying everything would be OK. The doctors needed an echocardiogram, but it was not possible to have one, so after ten days in hospital, you and Mummy were flown back to Melbourne in the air ambulance. Making the most of the playroom Two infections had at Royal Canberra Hospital, developed, the more November 2012 serious causing a significant blockage in the conduit. A direct line (Broviac) was put to your heart, to administer antibiotics and another open heart surgery was scheduled for August. Dr Yves d’Udekem looked after you a second time, replacing the conduit with a wider one. Your heart responded well, but you had a number of breathing complications and remained in ICU longer than expected. You had such a cheery disposition, even when sick. It was hard seeing you so unhappy after this operation. When we finally went home, you still had the Broviac and we had to be extra careful with you until it was removed weeks later. By October, you seemed to be doing great, but a routine echo showed a new area of narrowing. Your cardiologist, Dr Bennett Sheridan recommended placing a stent, but wanted to wait till 3 months after your last surgery. In the meantime, you were given the ‘all clear’ to travel and you went on a fantastic holiday with Mummy and her best friends and their bubs. You visited the family in Canberra

on your way home to Melbourne. You became sick again, this time with a urinary tract infection and were again admitted to Canberra Hospital for about a week. The doctors and nurses remembered you and were happy to see you much improved from your earlier visit. By the time the stent was placed in early December, we hadn’t been free of the hospital for more than a fortnight and you’d spent close to half your life there. You were the only one this didn’t seem to bother. You grinned and put up with everything. Surprisingly, (given your history) the stent placement was uneventful and you stayed only a few days in RCH. There had been a few other hiccups up to this point, but to be brief, we’ve skipped over them. There are still a few unresolved issues, but we are hopeful that 2013 will be a much smoother ride. We cherish every moment with you and are eternally thankful to everyone at RCH for taking such wonderful care of us all. You will need more surgeries over the years and constant monitoring, but we will always be here beside you, holding your hand, sharing your smiles and tears and giving you our uncompromising love and support. Much love and cuddles Mummy and Daddy xoxo January 2013

Happy New Year, January 2013

Logan’s Grandma’s Muffin Day Fundraiser HK Logan Howard's Grandma, Elaine Atkinson, recently held a successful Muffin Day fundraiser at her workplace. With the help of (baking) volunteers, she sold muffins, chocolates and HeartKids merchandise. Elaine raised over $2850 for HeartKids!

Some of the guests at the event and (below) Logan drawing the lucky door prize

Above: Karen, Logan’s mum, and Elaine baking up a storm and (right) just some of the muffins!

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Congratulations!

Special Offers Mother’s Day Merchandise and Raffle Spoil your mum this Mother’s Day and support HeartKids at the same time.... Mother’s Day Pack: $15.00 plus postage & packaging $10.00 (Victoria) or $13.50 all other states, or ring and organise pickup from the HeartKids office. Pack includes: Two pashminas, travel mug, HK keyring and more.

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New Babies

Congratulations and our very best wishes to all these   families who have welcomed new babies in recent months.  Robert & Jody Horvat announced the arrival of their son, Lucas William, on 16th October 2012. HK Lucas is a little brother to Joshua.

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Greg Du Chateau & Kara Chun and big sister HK Coco have   announced the birth of Zjef on 1st November.

 Daniel & Nicole Wilce announced the arrival of their daughter  HK Shelby on 19th November, a sister to Bailey and Noah.

Peter Kemp and Jane Davies have welcomed their daughter  HK Sarah, born 29th November. Sarah is a sister to Matthew,  Danielle and Makayla.

Grant & Nikki Crutchfield have a new son, HK Alex, born 19th December. Alex is a brother to Holly, Mark and Ava.

 

Leighton and Joanne Pratt and big brother Scott, have welcomed their son and brother HK Kylan, on 8th January.

Hayden & Louisa Corrigan have announced the arrival of their son, HK Max, on 14th January.

Mother’s Day Raffle: With each Mother’s Day pack purchased you will also go into the draw to win the raffle prize, to be drawn on Thursday 2nd May.

    

 Sam & Lindsey Brittlebank have announced the arrival of their  

son HK River, on 21st January, a brother to Jackson and Holly.

Shannon Radford & Stacey Kennedy have welcomed their son  Silas Leigh, born 31st January. He is a brother for HK Arlyn. 

 Duncan Campbell & Rebecca Reynolds have announced the  arrival of their daughter Kyla on 7th March. She is a sister to 

Hayley and Heart Angel Mia.

Ashlee London (an adult with CHD) and Jesse Boyle are thrilled to announce the arrival of Cassius, who was born on the 19th March 2013.

 In each edition of the newsletter we like to welcome any  new babies who were born in the last three months.

Please contact us on email: heartkids@heartkids.org.au or phone (03) 9329 0446.

We’re thrilled to introduce our own branded online shopping mall powered by GOthat. Packed with top local and international brands GOthat donates 50% of their commission on your every purchase to us! Shopping and sharing GOthat with your buddies could make a world of difference to our cause. Go to http://www.gothat.com/i nvite/heartkidsvic and start shopping!

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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!

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

Donation Tin Update

In January we placed 99 tins in various places throughout Victoria and Tasmania; in February we placed 68. Our aim is to place 100 tins a month. If you can help us reach this goal, please contact heartkids@heartkids.org.au or phone the office on (03) 9329 0446.


Reaching Milestones

Braden started high school this year .

Kimmi was so excited to

start school.

d Lincoln has starte school this year.

Prep. old, on her first day of This is Jessica, 5 years

Lily started in Prep this year.

d at 4 year old Arlyn has starte year. kindergarten this Millie is going to 4 year old kinder this year.

arted and Rylee who st This is Danni (left) . ar One this ye Prep and Grade

Joey was very happy to be starting his first day of kinder.

Here’s Mitchell on his first day at Primary School.

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Hospital Happenings World Social Work Day

World Social Work Day was celebrated on 19th March and this year’s theme was “Promoting social and economic equalities”. We would like to thank the Social Work teams at RCH and Monash for the work they do assisting our families.

Hasbro Donation

RCH Cardiology Clinic staff were thrilled to receive some toys kindly donated by Has bro which will help to entertain children during their cardiac outpatient appointments.

HeartKids presented our RCH Social Work team with a smash cake to acknowledge their special day.

Ea st er Gi fts

HeartKids distributed Easter goo die bags to children in Koala and Rosella wards. Special thanks to everyone who don ated items to make the bags our best yet!

Australia Day Thanks to The Cake Angels and Mamma Mia Cupcakes we spread some Australia Day spirit around the Koala ward. In the words of a four year old patient, “AWESOME CUPCAKES”!!!!!

Nurse of the Month Award HeartKids sponsors the Nurse of the Month Award which recognises the work of our wonderful Koala ward nurses. Patients and families can vote for the nurse they think deserves recognition by placing their nomination in the voting boxes located in Koala ward. Congratulations to Ashlea Austin, February Nurse of the Month and to Charlotte George, who was March Nurse of the Month.

Support at MonashH

eart

Our Family Support Coordinator Sherrie McDonald vis its the clinic on Wednesdays 1.00 pm - 4.00pm Monash Children’s Clini c, Special Medicine Centre (next to McCull och House) 246 Clayton Road, Clay ton 12

IN HOSPITAL

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

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!


RCH Cardiology Clinic Hi everyone! My name is Mailei and I’m one of the Cardiology nurses often found at the Cardiology Clinic (near the meerkat enclosure). Hopefully you have had the chance to check out our fantastic new hospital since the big move over a year ago. In terms of the running of Clinic we have tried to keep things the same. Here is a bit of a run down on how it all works and falls in to Mailei at A3 desk place. As many of you may be aware, we now have a central booking system so many of your appointments are now being generated through the booking office (phone 03 9345 6180). With your review appointments you should be receiving only one letter with the time of your earliest appointment. Please remember to check the comments section for any additional information regarding your appointment, eg. bringing appropriate footwear if needing an exercise test, fasting if needing a specific exercise test or sedated echo. Please also remember that in some circumstances you may be required to be here for 2-3 hours including tests and it is indeed vital that you stay to see your cardiologist for your results. Cardiology Clinic The cardiology clinic is situated in the Specialist clinics off ‘Main Street’ on the Ground floor (between the hospital pharmacy and the giant iPad). We are on the left side at the very end – A3 desk (otherwise known as the The Cardiology Clinic meerkats). When you arrive for your appointment, please line up at the bollards and wait to be called up to the desk. As our reception staff are also making follow-up appointments and processing other patients, it can take a few minutes to call you up. Bring your child’s Medicare card and health record book to show a recent height and weight if applicable or if you would simply like us to record measurements from your visit. We may also have requested a new referral, which will have been highlighted on your appointment letter. Once checked in, we ask that you do not venture too far away and listen out to be called by one of our nurses. It

Tests performed at the Cardiolgy Clinic may include (left to right) blood pressure, echo and ECG.

can get very busy and noisy in the room so it can be difficult to hear. The nurse will firstly check height and weight (if applicable) and then record your child’s heart rate, oxygen saturations and blood pressure. In addition to this we also explain the tests we may be performing that day, as well as have a general chat to see how things are going at home (if following surgery or commencing new medication). Tests.... Once you have seen the nurse we will then get you in for your tests as soon as one of our technicians is available. Tests that may be required include echo, ECG, pacemaker check, holter monitor or exercise test. We only The meerkats are a gre at attraction have a certain number of rooms, as well as technicians, so at times again there can be a wait. We will however be able to give you a rough idea at the time. Please bring with you any comfort items, snacks, or iPad/DVD player if you feel this will make for a smoother appointment. Please also bring with you any bottles of milk/formula as necessary. It is always a good idea to dress your baby in an outfit that will make it easy to access the chest area in case they are asleep prior to having their ultrasound (echo). Button up or press-stud clothes are always a winner! We do have built in TV’s in all our echo/ECG rooms but no longer have any DVD players. Consultation…. Once you have completed your required tests we will then get you to take a seat again until you are called in to see your cardiologist. If you want to go and get a drink or something to eat please check with your nurse, as there is the chance you will miss your appointment. If your cardiologist is running late for any reason we will let you know and of course, under those circumstances, we may advise that you do have time to go for a drink/food. It is vital that you do indeed wait to see your Cardiologist for your results as well as any other important information that could be relating to upcoming surgery. Once you have had your consultation we ask that you again return to the staff at the desk to sign your Medicare slip and we can then book you in for your next appointment if necessary. If you have any concerns/feedback, please do let us know as we are always looking to improve our service…. See you soon in Clinic!!

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Heartfelt thanks for ... HeartKids Awareness Month During February we ran a number of initiatives to raise awareness about HeartKids. Several families shared their stories in their local newspapers; HeartKids’ TV commercials aired nationally; the Retail Food Group ran commercials and in-store combos supporting HeartKids Awareness Month; our volunteers manned stalls at shopping centres and conducted a number of sausage sizzles.

stland, Stalls were held at Ea Box Hill za, Pla h ug Greensboro (above) Centro and Chadstone

Our Facebook page featured “The Faces of CHD” - if you would like to view the album, please click on Photos and select the album “Faces of CHD” when you visit: https://www.facebook.com/HeartKidsVIC We posted statistics and facts about Childhood Heart Disease all resulting in an amazing surge in hits to our page over the month peaking at 70,044!!! Our Support team held a special morning tea for our in-patient families at The Royal Children’s Hospital on 14th February “International Congenital Heart Disease Awareness Day”. A HUGE thank you to the Cake Angels Network for their wonderful donation of baked goodies and a beautiful cake to raffle (pictured below). The treats were thoroughly enjoyed by families and staff.

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A Patch Colouring-In competition was run during February - children downloaded the colouring sheet from our Facebook page and some schools who ran Awareness Month events also participated. Pictured are the winning entries in the age groups 0-2 years, 3-6 years 7-9 years and 10-13 years. We would like to thank all the families who shared their heart children’s stories during HeartKids Awareness Month. Thank you for helping us inform more people about CHD. We remembered our angels and celebrated our survivors during February. CHD doesn’t just affect our children and their families for one month of the year - it is ongoing. Please keep raising awareness any way that you can.

Thank You Angels

“Thank You Angels” is the second single from the new O’SHEA album ‘One + One’. Mark & Jay O’Shea became ambassadors of HeartKids Queensland in 2012. It is a very personal issue for the pair as Mark is a Queensland heart kid, having had his first surgery at the age of 6 months, and again in 2010. The video clip was released during Awareness month and features some Queensland heart children. Please view the video clip on You Tube and purchase the song on iTunes.

O’Shea visited JB Hi-Fi Frankston for a live performance and signing sessions on 16th February and many of our families attended.

Bunnings BBQ at Waurn Ponds

On Saturday 16th February the Geelong group held a BBQ at Bunnings Waurn Ponds. It was a hot day, but with fantastic help from family, friends and HeartKids families, there was a great outcome. Our total profit was $2051.95 - an awesome effort. Thanks to our volunteers on the day, Alesha, Shane, Jade, Paul K, Paul F, Robyn, Tom, Audrey, Dave, Kristen, Kerri, Libby and of course Wayne, for slaving over the hot BBQ for the majority of the day. For their kind donations we also thank Fresh Generation, Hepburn Springs Drinks, Brumby’s Bakeries Geelong and Alcoa Point Henry.


...Awareness Month Efforts St Dominic’s Primary School St Dominic’s Primary in Camberwell supported our February Awareness Month by holding a HeartKids Day and making their Friday school assembly, run by 1/2C, all about CHD and HeartKids. The children re-enacted scenarios where a sick baby is bought to hospital by their parents and diagnosed with a heart condition by doctors and nurses, and

they gave the school some statistics about the prevalence of CHD in our community. With the combination of merchandise sold, a gold coin donation for wearing a splash of red, collection tins, and other activities including a colouring competition, the school raised a grand total of over $1,300 for HeartKids.

Parkmore Poultry and Game Parkmore Poultry and Game in Parkmore Shopping Centre, Keysborough, raised money for HeartKids on 14th February. Katie Hammill and Lauren Johnson spent the day cooking samples at the front of the store for people to have a free taste test - they cooked hundreds of chicken ribs! They asked people for a gold coin donation for HeartKids and everyone who donated was given a heart-shaped chocolate! Katie and Lauren, who each have a heart child, had decorated the shop with lots of balloons and posters and they also handed out flyers for awareness. At the end of the day they had raised $550.55 and are now looking forward to promoting HeartKids again next year!

Parkmore Poultry and Game offe red free taste tests and gave out free chocolate hearts for all gold coin donatio ns

Echuca Awareness

It was heart child Chelsea’s and her family’s goal to raise awareness of childhood heart disease during February’s HeartKids Awareness Month Donation boxes were placed at Echuca NAB, Two Tarts Juice Bar and Numanz Embroidery for the whole month of February. A colouring competition for kids and a HeartKids smoothie were very popular at Two Tarts Juice Bar to help raise awareness.

There was also a stall at the Moama Market where donated soft toys were sold, a sausage sizzle was held at Bunnings and profits donated to Heartkids. It was a successful month with many more people now aware of the effects of childhood heart disease and the support HeartKids gives to the families affected. A special thank you to Lorelle and staff at Two Tarts Juice Bar and Catering, NAB Echuca, Numanz Embroidery, Bunnings Echuca, Rods Meats, Moama Bakery and Beverly Crawley (soft toys).

Photos (L to R): Chelsea at the sausage sizzle at Bunnings, at Moama Market, with her brother Zachary at the Juice Bar and promoting the HeartKids smoothie

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Tasmania News HeartKids Tasmania Car and Bike Show On 24th February Aussiecoupes.net held their 3rd annual HeartKids Car and Bike Show at Josef Chromy Wines at Relbia. Unfortunately the weather affected the size of the event with widespread rain having an impact on attendance numbers. I would like to thank all the Volunteers, including the VET students from St Patricks College, Scotch Oakburn and Grammar for their help and support on the day. Also thanks to my family and friends for their ongoing support of this wonderful event. We also say a big thank you to the HeartKids Branch Network Coordinator, Sherrie McDonald for travelling over from Victoria for the event Thanks to our official photographer Kylie Hamilton Photography, The Star Wars Storm Troopers, The Launceston Blues Club, Salters Hire, Bowdens Own Premium Car Care, and AutoBarn Launceston. Aussiecoupes were able to donate around $700 to HeartKids as a result of the day. We look forward to seeing you all at the next event in February 2014. Kylie Smith Coordinator Launceston Branch

as, Volunteer Kirby and Claire Gluy rrie She with , ania Tasm both from McDonald from Victoria

Sincere thanks to Kylie Hamilton Photography for permission to print some of her car photos.

Indiana’s Gift Indiana Edge spent several weeks in hospital when she had Kawasaki Disease. Last year she thought of a way to help other children who would have to stay at the Launceston General Hospital during the Christmas holidays. She asked friends and family if they wanted to help find toys and presents and craft packs for the children in hospital. Her idea snowballed and as a result, Indiana and her helpers were able to deliver two trolley loads full of boxes! The photos show Indiana sitting at a table laden with donations, and some special visitors, the Thylacine Squad and the Rainbow Fairy from The Fairy Shop, who came to the hospital to visit Indiana and the children in the ward.

Cambridge Park Sausage Sizzle Our Hobart group held a sausage sizzle at Cambridge Park in February to help promote HeartKids Awareness Month

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Netball Team Kylie Moore, mum to HK Lachlan, is in a netball team where everyone wears a HeartKids polo shirt as their team uniform.

Kylie is pictured here front right. The Heartkids Netball Team were runners up in the Huon Valley PCYC Ladies Roster in 2012. Now they have their fingers crossed for the premiership this year!


Branch News You are welcome to contact your local Branch Co-ordinator to HeartKids has a number of Branches around Victoria and Tasmania. activities in your area. introduce yourself so the Co-ordinator can keep you informed about watch the branch news on our website: www.heartkidsvic.org.au Please see contact details on the back page of this newsletter and us on Facebook for event dates. Select Members/ Events/ Branch Network-Coffee Mornings or follow

We are pleased to introduce two new Branch Co-ordinators.

Claire Gluyas from Devonport ......

Fiona Dowie from Mildura ......

tography

stine Dean of K & R Pho

Photo courtesy of Kri

My name is Fiona Dowie and I have recently put my hand up for the role of Branch Co-ordinator for Mildura and the surrounding area. My aim is to organise a bi-monthly support group for local heart kids and their parents, where we can all come together and offer peer support and friendships within the group. On a personal note, I am married to Ryan and together we have four beautiful children; Kobe, Alaska, Tilly and Lincoln. Alaska is our heart child and was born with Interrupted Aortic Arch & Aortopulmonary Window. She had her open heart surgery at 6 days old and has since flourished in leaps and bounds. I can be contacted on M: 0438 396 790 or E: ryan.dowie@ bigpond.com for details. I look forward to speaking and meeting with you soon.

Tullamarine Lots of fun for kids at a recent Coffee Morning at Tullamarine

I am honoured to become a Branch Co-ordinator for the Devonport region of North West Tasmania for HeartKids. My name is Claire Gluyas and I first became a member of the wonderful HeartKids family in Adelaide in 2008 just after our son Edwin was born. I am married to Mark and we have two children Annie (6 years) and Edwin (4 years). Our family moved to Tasmania (my home State) in 2009 and we have enjoyed getting to know members of the HeartKids community here. I have enjoyed a pre-family career in tourism/hospitality both interstate and overseas, and have most recently completed studying nursing! I look forward to providing support and guidance to fellow heart kid families, as well as working together as we strive to increase awareness of Childhood Heart Disease in the wider community. You are welcome to keep in touch via email or my mobile: richardsclaire@yahoo.co.uk or 0408 351 661.

Geelong Easter Egg Hunt On 1st April the Geelong HeartKids Group enjoyed a family day for Easter which included some craft, egg and spoon races, bunny sack races and of course, an Easter egg hunt!

Our thanks to Coles for their donation and also thanks to all those who attended, making the day an enjoyable one.

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HeartKids Australia News heart surgery. HeartKids Australia It’s been an eventful few months at would like to thank both of them for HeartKids Australia. their support and for helping to raise Teen Camp 2013 was held from 18-21 awareness of CHD and HeartKids January at Gundiwindi Lodge, Wandin. amongst fellow parliamentarians. A great time was had by all! We were The day before, on the 13th of February, very grateful to have had Dr Michael awarded as part Toon, a heart kid and Olympic champion, the research projects were program In-Aid Grantsthe of attend as our Camp Ambassador. We of Details rne. Melbou in ced announ ions Champ would like to thank our Camp were that s project h researc five the made work hard and volunteers whose funded this year are presented on this camp possible. We would also page 5. HeartKids Australia would like like to thank our Teen Camp sponsors to thank Wilson HTM Foundation, the Actelion and LeasePlan, and, also Device Founding Partner of this program, and Technologies for providing our medical Kiwanis Australia, HeartKids Queensland, the of equipment. To read an overview HeartKids Victoria and HeartKids Western 6. Camp, please turn to page Australia for their support. As you know, February was “Awareness The inaugural Sydney Swisse Color Run, Month” for Childhood Heart Disease st 5 kilometres (CHD) and there were a number of events known as the ‘happie on the 10th place took planet’ the on that coincided with this time. fun run attracted The ry. Februa of On Valentine’s Day, the Hon Kevin Rudd 20,000 participants and raised funds for MP, Federal Member for Griffith and Mr HeartKids Australia and HeartKids NSW. Steven Ciobo MP, the Federal Member Participants ran through four different for Moncrieff, demonstrated bipartisan stages of colour, and by the end of the support for HeartKids and raised race everyone was covered in a myriad of awareness for CHD by wearing HeartKids rainbow colours. We’re looking forward lapel pins. to next year’s event. Both MPs have been personally affected With best wishes from everyone at by CHD. Kevin Rudd contracted HeartKids Australia, rheumatic fever at age five and recently Kind regards, underwent aortic valve replacement Steven time. second the Jann surgery for Ciobo’s first child was born with a Jann Kingston congenital heart defect requiring open CEO, HeartKids Australia

Polly and Waz from The Block and Erin Densham (left), heart kid and Olympic triathlete, were at the Swisse Color Run to represent HeartKi ds.

Carn the Kids Soccer

LeasePlan and the Melbourne Victory Football Club presented HeartKids families with the opportunity to enjoy all the excitement A-League has to offer at the Carn the Kids ‘Fun Day Out’ on Saturday 16 February at AAMI Park, Melbourne. Carn the Kids is a program that aims to give kids who may not otherwise have the opportunity, a chance to enjoy a fun day out.

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Reflections Heart Angel Angus John Albert Puszkar

Born 25th January 2013, to stay with us for only a short while before the angels took you away. We held you for only a short time but you will live in our hearts and memories forever. With love forever, your Mum, Dad and big brother Max.

rare occasions Throughout our lives, there are sient as a butterfly, tran and when someone as gentle, lovely stay just long enough will drop by, touch our lives, and beautiful that will and s ciou to leave something pre e been. always remind us that they hav

Heart Angel In loving memory of Olivia Nasserallah 2nd January - 3rd February 2013

A Poem for Olivia By: Her Mummy

Olivia is an Angel, Our daughter in the Sky to our William, and a supporter of the Pies. sister She’s a She is a precious Grandchild, a Niece and Cousin too. She’s a big part of our lives, and many others, not a few. She made us pray and think and change things that we do, She gave us hope and joy, even the day before she flew. It was so hard to watch her, but it never was a waste, For she has taught us patience, kindness, tolerance and grace. It broke our hearts to lose her, but it made her heart complete, For part of us all went with her, the day she went to sleep. See you later precious daughter, for this is not goodbye, For we will meet you later, with our Maker in the sky. Don’t forget we’ll always love you, and you’ll never be alone, We’ll always be beside you, since the day God took you home. So if you’re feeling sad or cross, like something is amiss, Look up and find the brightest star – It’s Olivia – blowing you a kiss.

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 Bryce McCartney 25th March 2011 Matilda Harrison 26th March 2009 Ashlee Buckton 28th March 2010 Noah Bannister 29th March 2004 Mary O’Keefe 1st April 2005 Xavier Samu 3rd April 2002 Emily Cook 9th April 1994 Daniel Kabrovski 9th 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 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 Jonathan McGrath 13th April 2008 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 Ashlee Buckton 23rd May 2010 Bryce Ibbs 25th May 2004 Mia Campbell 26th May 2010 Stephen Buckman 27th May 2010

In Memory of Stan Brown Passed away 10th March 2013, aged 85 years. In response to his grandson, Cameron Mates, acquiring a heart condition, Mr Brown made a very significant contribution to HeartKids Victoria during the following fourteen years, both through his regular fundraising and by raising community awareness in the Latrobe Valley. We have been very grateful for his contribution and our thoughts are with his family at this time.

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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Acknowledging.... Lyndhurst Primary School

The students of years 5 and 6 at Lyndhurst Primary School took part in a real life learning exercise based around planning, budgeting and running a fun fair for the rest of the school. The money raised from the fun fair was split between the bike education program at the school and a selected charity. HeartKids was chosen as the preferred charity after a presentation by Mickaila Sibberas to the rest of the students about her brother, Daniel, who is a heart child, and how HeartKids is a charity with a personal impact for her. Her presentation was heartfelt, knowledgeable and told the kids how lucky they are and how much they could do for those who deal with these medical issues on a daily basis. t of $500. The rest of the students voted and HeartKids was chosen as the recipien HeartKids and Our Ambassador, Glenn Archer, attended the school on behalf of ly. assemb school the of front in a was presented with a cheque by Mickail challenges the In thanking all the students for their efforts Glenn told them about ids HeartK that work that confront children suffering from heart disease and the do in supporting them through those challenges.

Going, Going, Gone Goatee

“I have now had my goatee for 7.5 years and I always said I would shave my goatee for a charity’. When Deon Mackay’s daughter Shelby-Anne was six months old, she was diagnosed with a Congenital Heart Disease called Scimitar Syndrome. Deon subsequently chose HeartKids to be the beneficiary of his fundraiser.

The fundraiser went really well and thanks to many supporters raised $3345 for HeartKids (including $300 from Shelby-Anne’s birthday).

Madeline’s First Birthday Madeline Park recently celebrated her first birthday, Madeline’s family collected some money in lieu of gifts, donating $150 to HeartKids.

Birdman Rally Jesse Boyle participated in the Birdman Rally at Moomba on 10th March dressed as a super hero. Jesse used the opportunity to raise funds for HeartKids, a cause close to his heart as his fiance Ashlee London is a heart kid. He raised over $900!

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The photos show Glenn Archer, and then Mickaila, addressing the school students, and also Mickaila presenting Glenn with the cheque.


....Special Efforts! Clifton Springs Bowling Club

Above: John Miller addressing the players; the Miller family. Right: HK Kiana Stanley drawing the raffle; team-mates HK Tyson Rufus & Alison Payne; the first prize winners.

The Clifton Springs Bowling Club held a tournament and raffle in memory of Shaun Wilson-Miller on Sunday 10th March 2013. Thanks to two major sponsors, Geelong Travel and Geelong Constructions, the bowlers played for good prize money. The day was a great success raising $6000, with proceeds given to HeartKids Victoria and TLC for Kids. We would like to thank everyone involved at Clifton Springs Bowling Club especially Shaun’s grandfather, John Miller, who came up with the idea as a tribute to Shaun.

Biggin Scott at Yarraville Festival

On 16th February, Biggin & Scott Real Estate in Yarraville held a Fairy Floss stall at the Yarraville Festival to raise money for HeartKids. The photo shows HK Oscar and his sister Ruby enjoying fairy floss for the first time.

Nilma Primary School The 73 students at Nilma Primary held a fundraiser and generously donated $100 to HeartKids. The photo shows some of the students with Get Well cards they kindly made for the sick children at The Royal Children’s Hospital.

Hamlyn Banks Primary Recently Hamlyn Banks Primary School held a fundraiser in memory of Heart Angel Eliza Davis. Her big sister Nikkitta attends the school and together with the Social Services Coordinator at the school, Mrs McLaren, they arranged for all the kids to purchase jellies and they also had some beautiful ‘heart’ face painting done. Donations from these activities were given to HeartKids - they raised a fantastic total of $139.05. Here is a photo of Nikkitta and her sister Sierra having fun on the day.

Ballarat South Rotary Raffle 2013

We would like to thank the Rotary Clubs of Ballarat South and of Highton for their support of HeartKids via their recent raffle. We are pleased to announce that with everyone’s combined effort we have raised $4338 for HeartKids. This includes the 20% that the Rotary Club of Highton has kindly donated back to us for the second year running. Thanks to all who have bought tickets or who have been selling them. HeartKids send a big Thank You to Libby Gibson from our Geelong Branch, who has again coordinated the distribution of ticket books.

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Thank you for your recent gifts... Donnelly Family Donovan, Jason Edwards, Peter & Elyse Essendon Croquet Club Featherston, Kevin & Beryl Filipek, Sue Gilmore, Craig Gruber, Maria Gupta, Ashish Hamlyn Banks Primary School Hasbro HeartKids Australia Inc Hotchkiss, Wendy Johnston, Mr Phil Kabrouska, Valentina Kiwanis Club of Melbourne La Luce Soy Candles Lowden, Robert Lyall, Kate Lyndhurst Primary School Mamma Mia Cupcakes Marshall, Emma Martino, Mr and Mrs R Melbourne Heart Memorial Donations for Arlo Donnelly Memorial Donations for Tina Nelson Miers, Chelsea Mikkelsen, Brian Monash New Born

Ararat and District Heartbeat Atkinson, Elaine Aussie Farmers Direct Bainbridge, Mackenzie Barlocci, Daniela Bartuccia, Caterina & Anna Basson, Marinelle Bishop-Fox, Kirsty Bourkies Bakehouse Bowden, Wayne Burgess, Matthew CAF Australia Campbell, Bree Cantwell, A Carn the Kids/LeasePlan Australia Caruso, Josephine Caruso, Tina Cater, Shae Centro Karingal Centro Keilor Clapp, Mr W Clifton Springs Bowling Club Coffee Supreme Coles Burnside Coles Port Melbourne Compston, Julie-anne Country Women’s Association De Napoli, Julie Derham, Tahlie

Nelson, Matt New China Restaurant Parker, Lisa Pierce Family Point Cook Town Pozo, Jacqueline Precious Hearts Quinane, Bianca Rattray, Rhonda Ritchies Stores Rizzuti, Erica Rodger, Tim Serratore, Veronica Seyis, Mitat Sherlock, Lauren Smith, Linda Special Treats by Carolyn Spencer, Ronnie Spiers, Mr Barney Sweet Charm Cakes Tang, Peter & Joyce Team Teddy Terrill, Mark The Australian Cake Angels Network Thomas, Fr. Donald Thompson, W J Trybooking White, Sue Z Transport Group

Zaidee’s School Educational Program After many years of discussion and planning, Zaidee’s Rainbow Foundation has launched Australia’s first ever online schools educational program for organ and tissue donation. The program was professionally written by ACHPER who specialise in health education in schools at all levels. This is an online educational program designed for teachers to have both whole of class participation as well as individual input.

Both students and teachers look for real life stories that Organ & Tissue have relevant impact DOnaTiOn with powerful Information messages to inspire Families and motivate their education, and that is what Zaidee’s Story does. It allows students on the HeartKids to think about d rea be can er fly is Th u What your family needs to

know

consent to • In Australia, the family’s proceeding organ and tissue donation is always sought. are • The majority of Australians organ generally willing to become donors. (79%) and tissue (76%) that helps a • The most important thing knowing the family’s decision is their ones. loved wishes of their

Zaidee with her parents Kim and Allan with big brother Jaz.

is Zaidee’s Rainbow Foundation and directed towards both children about those adults so they can think who are waiting for a lifesaving match for an operation and a suitable giving this organ or tissue. Think about a live better gift to others so they can to live. life and in some cases, just child in Zaidee Turner was the only 16 years, and Victoria under the age of to Australians, one of the youngest in 2004. donate her organs and tissues nationally She was only 1 of 6 children to donate their organs. of life to Upon her death and gift founded others, Zaidee’s parents to raise Zaidee’s Rainbow Foundation of organ awareness of the importance and tissue donation.

organ • Most religions support religion donation. To see what your website says visit the Donate Life http://www.donatelife.g ov.au/home and click on Religion.

for

Who to contact

5321 or allan@zaid ee.org 03 5823 0412 985 211 Zaidee’s Want to find out more about the Education Rainbow Foundation and or Program? www.zaidee school.org Foundation via the Zaidee’s Rainbow website http://zaide e.org

idsvic.org.a

website: www.heartk

22

both life and death in a way they have never before. And with death, life can also be given via organ and tissue donation and transplantation at end of life. Allan Turner has presented Zaidee’s Story to young people at hundreds of schools over the years, of all ages from primary to secondary to universities. Students understand what organ and tissue donation is all about, after it is explained to them by way of what Zaidee went through and then donated at the end of her short life. Allan always explains that we need small children to donate back to other small children. As adults, our organs and tissues are too big for donation back to small bodies. Educating our young students today allows for better understanding of a subject that is not normally spoken about in schools or at home. Participation in this program will encourage students, teachers and parents to “Inspire Discussion” as a result. www.zaideeschool.org


Yes! I’d like to be involved with HeartKids Victoria... HeartKids Victoria is a registered charity and our services rely heavily on the wider community to be volunteers, sponsors and donors. Tax deductible donations can be made securely on our website www.heartkidsvic.org.au or forwarded directly to HeartKids Victoria. Please send me more information about HeartKids Victoria and in particular about:

p I would like to make a donation of $.........................

(thank you, an official receipt will be sent)

p Cheque

p Money Order - payable to HeartKids Victoria

p Visa

p Mastercard

Credit Card No:

Expiry Date: __ __ : __ __ Signature: ...........................................................

CVC No: __ __ __ Cardholder Name: ..........................................................

Date: ......................... Signed: ........................................................................

__ __ __ __ : __ __ __ __ : __ __ __ __ : __ __ __ __

p I would like to make ongoing donations to HeartKids

p Becoming a Member (Membership is free)

p Becoming a Volunteer

pP  articipating in fundraising & awareness

p Business sponsorship

pM  aking a regular gift through my bank

Street Address: .................................................................................................

p Leaving a gift in my will

Suburb/Town: ................................................ State: .......... P/Code: .............

Please complete this form & post to: HeartKids Victoria PO Box 803, Parkville 3052 Donations of $2 and over are tax deductible

Please automatically debit my credit card: Amount $.................................

p Monthly p Quarterly p Yearly I hereby authorise HeartKids to deduct these funds from the credit card detailed on this form until further notice.

Mr/Mrs/Ms: (First Name) .............................. (Last name)........................................................

Phone: ................................ Email: .................................................................. Heart Child’s Name (if applicable): ........... ............. Relationship to child: .............. Please be assured your details remain strictly confidential. If you do not wish to receive any further information from HeartKids Vic, please tick this box p

Sponsors and Supporters National:

State:

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 

 

Diary Dates

Run - ‘Glow Run’ Fun  Saturday 20 April Fun Run, Emerald  ow inb Ra ril Ap Sunday 21 ffle Draw  - Mother’s Day Ra  Thursday 2 May Nights of t gh Ni s id tK ar Friday 17 May - He riety Show   Saturday 18 May - Razzamatazz Va Event Heartfelt Golfing  Sunday 19 May ults Lunch Ad  ng ou s/Y nt re - Pa Saturday 25 May 13  agnificent Miss 20 M ay M  Friday 31 ly Ju in - Christmas  Saturday 20 July  nday 21 July - Run Melbourne Su sino ion Aid, Crown Ca  September - Fash 14 t Sa  Family Camp rm Fa rk ba le nd 20-22 Sept - Ca ature Trains Day   Sat 12 October - Box Hill Mini artKids er - Skydive for He  Saturday 26 Octob light Day  nF Fu r be m ve Sunday 10 No ts check inside or   For more about these eveng.au tkidsvic.or  go to www.hear

MELBOURNE METRO BRANCHES Bayside Sherrie McDonald 0431 544 510 sherrie.mcdonald@ heartkids.org.au East Bentleigh Maggie Stavrou (03) 9563 7133 maggiestavrou@live.com.au

HeartKids Victoria 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.heartkidsvic.org.au

Contact Details Ballarat Naomi Keath (03) 5332 3679 0408 559 535 mysissa03@yahoo.com.au

Wangaratta Karyn Howard 0412 988 285 karynh74@gmail.com

EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 kjsrms@bigpond.com

OVER 18’s Erin Cervelli (03) 9513 9030 with digo Ben hearts4heart - Support for Adults Natasha Prendergast Heart Disease (03) 5441 8262 or 0421 590 169 IA a Hall 0426 240 636 MAN Tany TAS goliathgroup@bigpond.com arts4heart.net.au @he info Burnie rt.net.au Echuca/Moama hea 611 rts4 330 hea 0448 y Amanda Rile Tracey Hard .com ond bigp DISEASE y1@ KI .rile ASA nda KAW ama 0438 962 056 (03) 9894 1257 es Mat 2127 ley 6431 Shir (03) ne Gail McFarla nsteve@bigpond.com trac on.org.au dati info@kdfoun Bundoora 0488 033 789 oundation.org.au .kdf long 366 www Gee om 518 site: nd.c Web Amy Heafield 0421 themcfarlane4@bigpo 2439 5250 Libby Gibson (03) amy.heafield@heartkids. KABUKI SYNDROME Devonport 0411 057 905 661 org.au Stacey McKiernan Claire Gluyas 0408 351 libway2000@yahoo.com .uk o.co (03) 5275 1542 aho ong e@y Danden richardsclair Horsham stacey@sakks.org Lucy (Fatima) Hussain Hobart 2280 5384 (03) er Bak nor Gay Website: www.sakks.org 0430 738 820 Paul Hyland (03) 6247 8435 carpentry@bigpond.com mtb HYPOPLASTIC LEFT HEART Pakenham 0418 561 504 y Valle obe Latr om ith SYNDROME Joanne Arrowsm paul.hyland1@bigpond.c 0427 955 453 ner Wer hie Sop & SIMILAR CONDITIONS 7083 (03) 5967 ceston Laun om nd.c igpo r@b erne sophia.w www.hearts-of-hope.org joarrow@bigpond.net.au Kylie Smith (03) 6393 6240 Leanne Amarant (Victoria) Mildura Tullamarine 0448 983 587 ie (03) 5358 2945 Dow Fiona Lynette McCoullough kylie.smith@heartkids.org.au 790 Leanneamarant@hotmail.com 396 0438 (03) 9333 1586 .com ond Csaba Ovari (Tasmania) ryan.dowie@bigp lynette.mccoullough@ INTERSTATE (03) 6229 8169 Portland heartkids.org.au Contact details at: 2503 csaba.ovari@hearts-of-hope.org 5523 Kerry Sluggett (03) www.heartkids.org.au Wantirna LONG QT SYNDROME (LQTS) 0418 312 320 Janita Felici 0422 976 024 .au .net inet tt@i Sherrie McDonald 0431 544 510 UPS gge GRO kslu m ST SPECIAL INTERE janitafelici@gmail.co u sherrie.mcdonald@heartkids.org.a Shepparton BEREAVED FAMILIES EMAIL or g.au s.or .sad www Cheryl Alexander REGIONAL BRANCHES SUPPORT www.sads.org.uk/ rg/ pe.o f-ho (03) 5825 4005 rts-o hea VICTORIA ww. http://w T. .com ond bigp CARDIOMYOPATHY ASSN of AUS chezalex70@ support/bereavment/intro.htm Albury/Wodonga u/ rg.a Website: www.cmaa.o South Gippsland April Schubert HEART TRANSPLANTS 5531 5182 (03) ey MUSLIM FAMILIES Kerrie Disn (02) 6056 6448 Belinda Holden 0400 714 182 608 Lucy (Fatima) Hussain 950 0409 967 0407 551 PACEMAKERS 0430 738 820 urme2@tpg.com.au 4 -698 april_peter@internode. Mandy Tichelaar (03) 9728 MULTIPLE BIRTHS on.net Stawell 22q11 il Schubert (02) 6056 6448 Apr Leanne Amarant Bairnsdale Audrey Cater (03) 9394 7965 412 864 0419 or 2945 0407 551 967 (03) 5358 Caroline Foard 0420 500 905 om ail.c hotm ant@ l_peter@internode.on.net mar apri nea lean 0438 928 821 audrey.cater@bigpond.com cfoardy@yahoo.com Wonthaggi Cath Methven 0429 325 643 catmet73@gmail.com

2013 Autumn HeartKids Victoria-Tasmania Magazine  

Magazine for families and friends of HeartKids Victoria-Tasmania

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