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VICTORIA Spring 2012

Quarterly Magazine for Victoria and Tasmania

Volume 22 Issue 3

* Abby’s Story *

Gala Ball



* support

N  ew RCH Wins Awards

awareness

research

advocacy


Matters of the Heart Chief Executive Officer

Our Team HeartKids Victoria Board 2011-2012 * Chairperson: Gary Karatjas

With Winter now behind us and as we look forward to fairer weather, I hope you enjoy this Spring Edition of the HeartKids Victoria Magazine. In this edition we feature a number of items of interest and many fantastic fundraisers run by our members and supporters. While not all of the fundraisers are featured in the magazine, we are extremely grateful to all who make the effort to raise these vital funds for us. For instance, since the last magazine, Josh Sharp through his Sharpie’s Charity Challenge Foundation again completed an amazing challenge to raise money for us. The Freemasons of Victoria and St Catherine’s School, Toorak, both ran fundraisers which contributed significant funds and I would also like to thank all of our members and supporters who registered and ran morning teas as a part of our “Cuppa” campaign. We had well over fifty registered participants and, while the final results are not yet in, I expect a good amount will be raised as a result. All of these fundraisers are important as they are the lifeblood that enable HeartKids to maintain our support activities. So thanks to all of you who take the time and effort to organise and run these fundraisers, regardless of size, we really appreciate it very much. Since the last magazine was released we have a new Ambassador, Chris Johnson, who has come on board. Chris is a former AFL player who played in three premierships with Brisbane. He achieved All Australian selection and was captain of the Australian International Rules team. He was also selected in the Indigenous Team of the Century. Chris has already been active, representing HeartKids at a recent Brownlow Medal event and leading the awareness around our upcoming Golf Day that will be held at Rosebud Country Club on November 23rd. There are a number of upcoming events that are highlighted on our Coming Events page including our Annual General Meeting and Christmas parties. It is worth pointing out that the Melbourne Christmas party will move location this year. Because of the terrible weather that has hit us during our last two parties at the Melbourne Zoo we thought it best to move to a location that would offer us shelter if we did happen to have heavy rain again. We hope you will enjoy the new venue. Just as I hope you will enjoy this Spring edition of the HeartKids Victoria Quarterly Magazine. Terry Hopkins CEO HeartKids Victoria

ts children with heart HeartKids Victoria proudly suppor Tasmania. out ugh disease and their families thro r to the back page For Tasmanian enquiries - please refe ators’ contact details. for our Tasmanian Branch Coordin

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* Vice Chairperson: Natalie Palmer * Treasurer: Deborah Bowling * Secretary: Lauren Trengove

* General Board Members: Karin Burgess Phil Riggio Chris Palmer David Cohen Toni Planinsek Terry Hopkins

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 sherrie.mcdonald@heartkids.org.au Amy Heafield amy.heafield@heartkids.org.au

* Support Events Coordinator Lynette McCoullough lynette.mccoullough@heartkids.org.au

* Administration Assistant Amy Emmett amy.emmett@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 may be Permission to reprint any rson. Any other articles irpe Cha the or or auth . required from the oria Vict ds ledgement to HeartKi reprinted with an acknow ine do not imply published in this magaz Please note that articles HeartKids Victoria. of s view rall ove not reflect endorsement and may d stories represent nions expressed in chil h Also note that the opi ails are specific to eac det l dica me t tha and personal experiences ilar to your child’s, sim ear app y ma ons diti case. Although the con specific information Parents requiring more other details may differ. . gist iolo card ir child’s should check with the

Front cover: Kylie and Sco tt Baker with their precio us new baby daughter, Abby. Cover photo courtesy of Lucy Crafter, Lucy Jane Photography. Thanks to all who sent photos and information for this edition. Contributions are always welcome - send to: heartkids@heartkids.org .au

Thanks to Fuji Xerox and Documents On Call for printing our magazines. Thanks to Gordon Patullo for post processing of some digital images.


In This Issue

Coming Events

HeartKids Victoria Annual General Meeting

Date: Thursday 25th October, 7pm start with refreshments available from 6.15pm Venue: HeartKids office, Suite 310 / 55 Flemington Rd, Nth Melbourne

Annual Gathering of Fairy Folk - Sat 10th November Venue: Kyneton Botanic Gardens at 11:00am-2pm Pass-the-Parcel are again sponsoring this fantastic event which is being held to raise funds for HeartKids. More information: info@pass-the-parcel.com.au

Myuna Farm Day - Sunday 11th November

Venue: Myuna Farm, 182 Kidds Road, Doveton, 10am - 2pm The Kiwanis Club of Sunbury offers our families this great day out, with entry by gold coin donation (per family). You will receive some free train and pony ride tickets and you will be able to visit the animals on the farm including the baby nursery. A magician, face painter and balloonologist will also be present to entertain the children. A free sausage sizzle lunch will be provided so lunchtime will give families an opportunity to meet. You can also bring along your own snacks/lunch if you prefer. Make sure you bring lots of drinking water for your use when walking around the farm. This event is for immediate family only as places are limited and we aim to accommodate as many HeartKid families as possible. Register via www.trybooking.com/bwbs by Friday 26th October.

Broadmeadows Car & Bike Show - Sun 18th November

Venue: Penola Catholic College, 29 Gibson St, Broadmeadows Time: 10am - 4pm Entry: $5.00 (Kids under 12 free entry with an adult); $10.00 with vehicle All vehicles are welcome More information: Luisa 0409 383 354 or Adam 0437 233 477

PENOLA CATHOLIC COLLEGE, 29 GIBSON ST, BROADMEADOWS ALL PROCEEDS ARE DONATED TO THE HEARTKIDS FOUNDATION COME AND JOIN US AT THE CAR & BIKE SHOW AND ENJOY CARS, BIKES, SAUSAGE SIZZLE, DRINKS, MUSIC, KIDS ENTERTAINMENT / FUN CASTLE AND RAFFLE

$10.00 per vehicle

Entry $5.00

(Kids under 12 free entry with an adult)

For more information please contact

Luisa 0409 383 354 or Adam Michielin 0437 233 477 PROUD SPONSORS

hellas

Ron Mace

A DD

Panel Works

9351 0300

Pty Ltd

Strathmore, Fawkner & Broadmeadows

p r i n t i n g

0416 978 972

9354 8731

123 Jumping Castles

BOMBERS AUTO PORT

HeartKids Golf Day Friday 23rd November, Midday start NIDDRIE

130 West St, Hadfield

9217 8825

9335 4924

Rotary Club Pascoe Vale

0415 047 431

Venue: Rosebud Country Club, 207 Boneo Road, Rosebud Presented by Biggin & Scott, the day includes: 18 holes of golf, Golf buggies, On course BBQ & refreshments, 2 course A La Carte Dinner, Chances to win fantastic prizes Special Guests including HeartKids Ambassador Chris Johnson

Entry fee: Single player = $95; Team of 4 = $380 Team of 4 + hole sponsorship (18 available) = $1,000 To access the entry form go to: www.heartkidsvic.org.au then click on News-Events

World Festival of Magic - Saturday 24th November Venue: Melbourne Convention and Exhibition Centre Times: There will be two shows, 11am or 2pm. Through the Lions Club, HeartKids can order free tickets for you to attend the World Festival of Magic. Please register your interest as soon as possible on: www.trybooking.com/bwbt and we will order tickets for you. They will be posted to you at least a week before the event.

2 Matters of the Heart 3 Coming Events 4-5 Abigail Baker’s Story 6 Family Support 7 HeartKids Gala Ball 8 RCH Wins Architecture Awards 9-10 RCH News 11 Adolescent Transition Youth Mentors 12 Congratulations & Celebrations 13 News from Tasmania 14 ‘Patch the Heart Lion’ Book Review 15 Family Functions 16 HeartKids Australia News 2 17 Reflections 18 ‘Live Life to the Fullest’ 19-22 Donations and Fundraising 24 Diary Dates

Christmas Parties 2012

Geelong: Saturday 1st December, 2pm - 5pm

Our Geelong group is organising a party so local families can celebrate Christmas together. If you could like to attend the party, please contact Libby Gibson on libway2000@yahoo.com or 0411 057 905. Where: Grovedale Memorial Hall, Reserve Rd, Grovedale (for families in the Geelong region) What: Kids disco hosted by DJ Mitch (www.djmitch.com. au). Wear your best disco outfit or favourite dress-up.

Melbourne: Saturday 8 December, 11am – 3pm

Venue: Moonee Valley Racing Club, McPherson Street, Moonee Ponds.

Come and celebrate Christmas with other HeartKid families at the Moonee Valley Racing Club and enjoy all the entertainment provided. We will give you free entry to the event for your immediate family and if you would like grandparents, friends and extended family to join you, they can book at a discounted rate of $5 for each adult and children over 3 years old. BYO lunch or purchase lunch from food vendors who will be present at the party. Further details about specific food vendors will be provided after your registration. RSVP Friday 16th November. Please register all people attending at this website: www.trybooking.com/buxv If you are registering extra people other than your immediate family, please be ready to pay via credit card. For further information, contact Lynette on 0418 548 879 or lynette.mccoullough@heartkids.org.au

Bendigo: Party date to be confirmed.

If you are not on Natasha’s contact list, please register your interest with her on 0421 590 169 or goliathgroup@ bigpond.com

Hobart: Sun 2nd December (to be confirmed)

Register with Paul on paul.hyland1@bigpond.com or 0418 561 504 for more details

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Abigail Baker’s Story At 18 weeks gestation we had our scheduled morphology scan on our little miracle. For us to make it to 18 weeks was a miracle alone as we had lost 9 babies previously. A 45 minute scan took 1 ½ hrs (we thought because our baby was so active). We had been told everything looked great and we had a healthy baby. Next thing our obstetrician walked in to tell us that our baby has VSD (a heart defect called Ventricular Septal Defect). After the initial shock, we were told that they can operate to repair it or it can close before birth. I was booked in to have another ultrasound with the cardiologist at 22 weeks. The 22 week scan came quickly but not quick enough. We watched the cardiologist and the radiologist very closely hoping for a look that said everything was OK. Finally the cardiologist spoke and announced that there is no VSD, and a little scream of joy was released inside of me. After the scan my sister-inlaw and I went in to an office to speak to the cardiologist. The cardiologist took out paper and a pen and started drawing the heart, that’s when I felt my heart drop. He explained that there is either no patent ductus or there is no blood flow within the ductus. I had a wonderful obstetrician who explained that without a ductus we would be looking at heart failure at birth. Who could imagine that this could happen to us? How unlucky can we be? We had already been through so much and how could we get so close to having our heart’s desire, only for it to be taken away again? We continued our everyday life believing and trusting God that He would come through for us. We did everything to keep positive that we will have a live baby in our arms. We wanted to do everything, just like any other expecting parents. We had another ultrasound with the cardiologist at 28 weeks to check out our baby’s heart as she had got bigger and so they could see more. We were told that I needed to carry the pregnancy through to 37 weeks at least. Five weeks later I was admitted to the Women’s and Children’s Hospital in Adelaide to be monitored. Our obstetrician needed to keep a close eye on me - as the wall of my uterus was quite thin (a result of previous surgery), the fear was that the uterus would rupture, so we needed to keep baby in me as long as possible to give her the best chance. 34 weeks and 5 days came and I had another ultrasound with our cardiologist as our baby girl had dropped and was starting to cause pain as she began to stretch the uterus. Our cardiologist looked at the screen with that poker face once again. We held hands and prayed for blood flow within the ductus. Next we saw the cardiologist smile as he announced that there was blood flow in the ductus and he will not need to be at the delivery. We could barely contain the joy we felt! Suddenly the radiologist said, ‘What’s this?’ They had another look and found Tetralogy of Fallot (TOF). Our hearts dropped once again. We were trying to stay positive believing that this is better than heart failure at birth. We were informed that she would need surgery at 6 months of age and it would be done in Melbourne at The Royal Children’s Hospital. On February 2nd 2012, Abigail Isobel Ricarda arrived safely into the world, albeit 5 weeks premature. Everything about her seemed perfect but we knew that Abby would be in hospital for a few weeks before coming home. Like any other parent who has a sick newborn knows, the travelling to and from the hospital is difficult and leaving Abby in the hospital seemed like the hardest thing ever, as we just wanted to be with her 24/7. It was day 13 and Abby started to look sick, her extremities were dark blue. I could not imagine any part of anyone’s body being that blue. We spoke to a nurse and they reassured us it is normal as she is a “cardi baby”. As the day progressed Abby

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Kylie and Scott holding their daughter, Abby

showed no improvement. Later that night our gut feeling was that something was not right, so at midnight we drove an hour back to the hospital to see our daughter. We requested a review by the cardiology team the next day. That afternoon Abby had an echocardiograph, which showed that her Pulmonary Artery had become restricted and would need a shunt to repair it. We were advised that we would be going to Melbourne in 7-10 days. Emotionally we were not ready to go to Melbourne for our tiny Abby to have surgery. We left the hospital early on that Thursday night, emotionally exhausted and needing a good night’s sleep. On Friday morning the midwife came and asked me to sign transfer notes for Abby. We thought we had at least a few days before flying to Melbourne so we were definitely not prepared when the midwife came back shortly after to advise that our flight was booked for the next day! It was like we needed a ticket machine for the rest of the day as HeartKids coordinator and everyone imaginable came to speak to us about Abby, Melbourne and everything in between. Abby was now 16 days old and at 9:30am on a Saturday morning, she delayed all flights from Adelaide airport as she took off to The Royal Children’s Hospital. Our 1 hour flight was long. Arriving at Ronald McDonald House we received a phone call from Koala ward to let us know that Abby had arrived so we rushed to see her. Once Abby was settled in we spoke to the Cardiology team and were informed that her surgery was booked for first thing Monday morning (but the surgery team would be on standby just in case). On Sunday we met Cardiac Surgeon, Igor. He sat us down to explain the surgery and any complications and that the shunt they will be using is designed for a 4kg baby and Abby is only 2.9kg. He also informed us that our girl was to be transferred to Rosella ward (ICU) as she had deteriorated over night. Monday morning arrived and we walked down to theatre with her, and as we spent a minute or two telling her that we

Abby arriving at Koala ward in her Medivac Flight Capsule


Left: Here’s Abby two days after her surgery when her chest was left open for seven days. Right: At two days after surgery, Abby opened her eyes again after what seemed an eternity!

loved her, she gave us a look that said, “It’s OK Mummy and Daddy, I will be alright! All we could do was wait and continue to pray that our beautiful little miracle was going to be fixed without a hitch! Nothing could prepare us for the next time we saw her. When we walked in we saw her little body lying there with tubes and wires and with her eyes fixed open. In our minds we thought that they had brought her in for us to say good bye to her as she looked liked she had passed away. Our hearts almost stopped beating as we tried very hard to take it all in. Our wonderful nurse assured us that she was alive and explained everything to us, telling us it was a very successful surgery. Throughout the afternoon we had doctors and medical staff coming in and out of the room, (we thought because our baby was cute)! At 6.15pm we went off to have a quick bite to eat and praising God for great surgeons. We went back up to ICU only to find doctors still coming in and out and looking at Abby, not telling us much but just saying they are keeping a close eye on her. We went off to the parents’ lounge to have a coffee and within minutes of being there a nurse came up to inform us that they needed Scott to sign another consent form as her kidneys had started to fail. We felt like we were on a roller coaster ride and had no idea what lay ahead. Around 11pm the Cardiac Surgery Fellow, Johann, came back in to check on Abby. In his soft, calm voice he announced that he had a team coming and ‘they are going to open Abby up right here and right now’ as the shunt was too big and they would need to tighten it, and he advised us to go back to Ronald McDonald House and get some sleep. Scott wrote down his number and told Johann to call when they had finished, as we would not be able to sleep until we knew she was OK. At 1.30am Johann called to tell us that when they reopened her chest they found clots and fluid around her heart; as soon as he opened her chest her heart started beating again and there was no need to tighten the shunt; and he was leaving her chest open for a week to allow the fluid to drain.

The next 72 hours saw Abby in a critical state and unable to be stabilised. It was like watching an episode of ‘House’ as they went through different diagnoses, pumping broad spectrum antibiotics to cover all bases. Two days after surgery we were told the diagnosis was Necrotizing Enterocolitis or NEC, which meant that the bowel tissue had died. Sitting by her bed and crying out to God for our little girl to pull through, we were believing that God gave her to us and would not take her away. Every now and then Abby would open her eyes, it seemed to be her way of letting us know that she was alright! On Friday Abby went through another surgery to remove 90% of her large intestine and she now has a stoma. Abby was in Rosella ward for 16 days, so going to Koala ward (the cardiac ward) seemed like a goal that was unreachable. Having Tracy and Sherrie from HeartKids there to listen and have a great laugh kept our eyes on the end of it all at this time. It also gives you hope when you hear other families share how quickly things can change and finally we saw Abby turn the corner, come off the ventilator 48 hours earlier than expected and out of Rosella Ward a week earlier than expected. Abby was now 5 weeks old and we were on Koala ward and allowed to take our Princess out on our first family outing off the ward for afternoon tea. It was so wonderful to feel like ‘normal’ first-time parents wanting to show off our Gift from God. We flew home as a family twenty-nine days after we arrived in Melbourne. Today Abby is 8 months old and coming along wonderfully, reaching all her milestones. We are at Women’s and Children’s Hospital weekly as Abby still needs her TOF repaired and she is closely monitored by her wonderful cardiologist Malcolm Richardson. We are hoping to be back at RCH by the end of the year. It will be wonderful to catch up with our new friends in Victoria. Written by Kylie and Scott Baker

Two beautiful photos of Abby, aged 10 weeks old

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Family Support r Positive Thoughts isJa an amazingly

Meghan Roswick is from the US and HLHS! She recently positive, very active young lady with page: shared this idea on her Facebook just recently talking Here’s a great idea!! My mom was when she was about some things she used to do n I was in the whe s eles hop and n feeling really dow hospital. write down She would once (or more) per day n if it was as small eve ed, pen something great that hap was feeling down as me smiling at her, so when she d that had happened. she could look at everything goo r and also had a She wrote the notes on a calenda ’ so she knew that one sticker that said ‘GOING HOME the calendar. on it day she would be able to put pieces of paper and Or you could write your notes on one below - A Positive put all the notes in a jar like the Thoughts Jar. s of my mom to do I thought this was pretty ingeniou :) it re sha and figured I would

Father’s Day at RCH On Father’s Day our Support Manager Tracy distributed gifts to fathers in Koala and Rosella wards. A big thank you to Sweet Treasures by Vanessa for donating delicious baked goodies for our Dads.

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Cupcake Decorating

During the Septem ber school holida ys some sibling s of in-pati ents were lucky to attend a Childre n’s Cupca ke Decora ting course at Bake Boss. What an amazin g, fun experi ence for them and look at their wonde rful creatio ns! A huge thank you to our wonde rful friends at Bake Boss.

Family Support Team

The support team from around Australia came together on 8th August for training and a tour of The Roya l Children’s Hospital, Melbourne.


HeartKids Gala Ball It was glamorous, it was humorous, it was lively, it was entertaining, it was emotional but most of all it was fun.

Gold Sponsors

What a night our Gala Ball was this year. Hosted by Wilbur Wilde and Rhonda Burchmore the 320 guests were treated to a range of activities, presentations and entertainment that kept them enthralled for the entire evening. The evening started with the announcement and presentation of our 2012 HeartKids Bursary to Dr Darren Hutchinson by Dr Michael Cheung and Terry Hopkins before Dr Christian Brizard spoke about how HeartKids makes a very real and practical difference to the hospital by working so closely together. The formal part of the evening was rounded out by a moving presentation from our Chairman, Gary Karatjas, where he related his personal life experience in having a heart child. The closing of the formalities saw the Big City Beat take to the stage and amp up with their fantastic musical offerings. It wasn’t long before the dance floor was jumping. Brad Blaze the speed painter dazzled the crowd with his wonderful works including Sir Donald Bradman, Michael Jackson and a John Lennon that morphed into Steve Jobs. It was amazing. Russell Cambridge of Biggin and Scott, then led the live auction where the bidding was lively. This, on top of the silent auction and raffle, led to the night being very successful from a fundraising perspective with around $85,000 raised to put towards supporting our heart children and their families. The evening closed with Big City Beat filling the dance floor.

Silver Sponsors There is no doubt it was a special night and the feedback has been terrific. Special thanks go to Grand Hyatt Melbourne as their food and service was second to none. Wilbur Wilde and Rhonda Burchmore, Big City Beat, Brad Blaze, Dr Michael Cheung, Dr Christian Brizard, Russell Cambridge, Simon Braham of Signed and Framed, Alex Censor of Snappy Pics, and our volunteers on the night also warrant special thanks. As do our sponsors SCCS, NetApp, Bardot Junior, Canny Builders, Zagames, O2 Networks, CSG, Xerox, Planinsek Property Group, Real Estate Career Developers, and NAB Carlton. Thanks also to supporters of our auctions and raffle donors, including Spicer Thoroughbreds, JMS Diamonds, Hyatt Regency Sanctuary Cove, Le Petit Gateau, Almond Tree Frames, Myer, Rochford Wine, Forty Winks Prahran, South Wharf and Fitzroy, AH Beard, Sealy, Stella and Minx, Snugglebum, Tiger Tribe, Crayola, Bob Jane TMart, Brown Brothers, Classic Characters, Tomy Toys, Rhodes Hair Studio, Pandemonium/Sarsparella, Churchill Park Golf Club, Karin Burgess, Rundle, Fella Hamilton, Chadstone Shopping Centre, Ciao Bella Travel, and Anteaus Flowers.

Table Sponsors

But particular thanks to our organising committee who are all volunteers, Natalie Palmer, Anna Domine, Melissa Karatjas, Trish Payne, Jenny Kalmus, Virginia Williams and Nadia Hart and her company Hart+Hart for their outstanding efforts in pulling the night together and making it such a success.

Raffle Tickets

We are seeking your support to help sell tickets in the Rotary Club of Ballarat South raffle - this is a fantastic fundraiser for HeartKids that works really well with your support. Tickets are just $2 or books are $20 (10 tickets). HeartKids receives 80% of every ticket sold. Tickets must be returned by 20 January 2013 that’s a full 3 months to try and sell some tickets to family, friends, colleagues. If you can help please email: heartkids@heartkids.org.au or call 9329 0446.

1st Prize - Mazda 3SP25 Auto Sedan. $37,360.00 Inc ORC 2nd Prize - Mazda 2 NEO 1.5 Auto Hatch. $20,643.00 Inc ORC 3rd Prize - Travel Voucher $5,000.00 7


RCH wins Design and Architecture Awards National Infrastructure Awards 2012 • Project of the Year Dulux Colour Awards 2012 • Grand Prix Winner • Commercial Interior Winner LEAF International Interior Design Award (announced in London) • Interior Design The new Royal Children’s Hospital (RCH) has been declared the big winner at the 2012 Victorian Architecture Awards, taking out three of the top awards. The hospital was awarded the Victorian Architecture Medal, the Melbourne Prize and the William Wardell Award for Public Architecture. Since opening in late 2011, the new RCH has won multiple awards for design and architecture on the local and world stage, including: Australian Interior Design Awards 2012 • Premier Award for Interior Design Excellence & Innovation • Award for Public Design • Best of State Commercial Design • Award for Colour in Commercial Design

The new hospital campus brings together six levels of clinical, research and education facilities over 200,000 square metres within the 4.1 hectare site. Inspired by the quality of light, the textures and forms of its parkland setting, the new RCH delivers a patient and family focused healing environment based on the latest evidence and research-based design principles.

AIA Victorian Architecture Awards 2012 • Victorian Architecture Medal • Melbourne Prize • William Wardell Award for Public Architecture – New • Interior Architecture Commendation Design & Health International Academy Awards 2012 • International Health Project (over 40,000 sqm) – Winner • Interior Design – Winner • Sustainable Design – Winner • Use of Art in the Patient Environment – Highly Commended

Article written by RCH Corporate Communications

Monash Children’s Clinic Support at MonashHeart Our Family Support Coordinator Sherrie McDonald visits the clin ic on Wednesdays 1.00 pm - 4.00pm

Monash Children’s Clinic, Special Medicine Centre (next to McCulloch House ) 246 Clayton Road, Clayton

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HeartKids Family Support Coordinator, Sherrie with Nicholas and the Starlight Captains at Monash Clinic


The Royal Children’s Hospital Education Institute News Hole-in-one at the RCH

Meerkat Manners

Being in hospital doesn’t have to mean missing out on the fun of physical education, and so on Wednesday 12 September patients at The Royal Children’s Hospital (RCH) turned hospital spaces into fairways and greens by hosting a golf tournament, designed and developed by patients, for patients. The program was a collaboration between RCH Education Institute and Ryan Ward, volunteer and Director of Coaching at the Stay Balanced Golf Improvement Centre in Sunshine. The tournament followed an eight-week program aimed at engaging more than 50 patients in learning about the history and fundamentals of golf, as well as developing their skills using colourful SNAG Golf training equipment. As Glenda Strong, Executive Director of the RCH Education Institute explained, “Research tells us that inclusion of physical activity and education contributes to the prevention of chronic disease and improved overall health and wellbeing, particularly for children and adolescents.” “We’re concerned that patients at the hospital can be less inclined to participate in sport due to their health condition or a lack of opportunities to get involved. We’re committed to creating learning opportunities at the hospital that include physical education.”

A mob of meerkats lives in The Royal Children’s Hospital in an exhibit that replicates the natural habitat of a meerkat, with open air and sunlight. Staff at Melbourne Zoo visit the hospital every day to clean, feed and care for the meerkats, as well as provide educational sessions to children. The hospital meerkats are the inspiration for a book produced as part of a children’s publishing project with Kids’ Own Publishing, State Library of Victoria and the RCH Education Institute. The Royal Children’s Hospital Meerkats was launched at the hospital’s meerkat exhibit during Children’s Book Week. Over a series of weeks, children at the RCH took part in workshops alongside artists and teachers, and created stories and artworks imagining the meerkats in all kinds of playful and adventurous scenarios. The resulting book is a charming collection of their work.

Young Holly tucks int o a ‘meerkat’ cupcak e while enjoying the Meerkats book cre ated by RCH patients

RCH patient Yulie tees off at the Education Institute’s inaugural golf tournament

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.

Thanks to the RCH Education Institute for providing this article

as

RCH Morning Te

e to join us ilies are welcom m fa nt ie at tp ou d d Thursdays All ward, ICU an ld on Tuesdays an he a, Floor. te ng ni or for m unge on the 3rd Lo nt re Pa e th :00pm in from 10:30am - 12 ere! to seeing you th We look forward 9


News from RCH Information for Families with Cardiac Children HeartKids would like to inform families about the following research project and advise that you may receive an invitation to participate from Hoda Moghimi.

Nurse of the Month A ward

Improving Outcomes in Cardiac Surgery Patients Summary of Research Project Our aim is to see whether it is possible to apply techniques used in industry to improve decision making in the care of cardiac patients. Hoda Moghimi, who is a PhD student from RMIT University, will apply intelligent Information Technology techniques to surgery for congenital heart disease, together with her supervisors Professor Nilmini Wickramasingh, Dr. Stas Lukaitis and A/Prof Michael Cheung. Hoda is focusing on the prediction of surgical results by the identification of risk factors. A key part of this research is a parent questionnaire which will be completed anonymously. Your contribution is important to the successful completion of this research project which we hope will improve our understanding of risk factors at the time of surgery and how we can improve outcomes. Many thanks in advance from Hoda and her supervisors for your support and participation.

HeartKids is very happ y to sponsor the Nurse of the Month Award wh ich recognises the wo rk of our wonderful Koala ward nurses. Patients and families can vote for the nurse they think deserves rec ognition by placing their nomination in the voting boxes located in Koala ward. Congratulations to Da isy - July Nurse of the Month, Meredith - Au gust Nurse of the Month , Rachael - September Nu rse of the Month.

HeartKids 2011 Bursary Recipien t - Dr Bryn

Jones

Thanks to the support of HeartKid s Victoria through their inaugural bursary I was able to undertake further training in Cardiac MRI at the Royal Brompt on Hospital and Great Ormond Street Hospita l for Children in London. My time away comprised a three mon th intensive course in cardiac MRI at the Royal Brompton Hospital which is one of the largest MRI units in the world. They have been pioneers in cardiac MRI in patients with both acquired and congenital heart disease and it was a tremend ous learning experience to attend this course. The course runs twice a year and involves formal lectures, hands on MRI scanning and reviewing and reporting of scan s. I was also able to spend time at the Cardiac MR Unit at Great Ormond Street Hospital, which provides the largest Paediatric Cardiac MRI service in the UK. I was able to observe their scanning techniques and learn directly from the doctors and technologists working in the department. Importantly I was also able to observe their hybrid catheter/MR I laboratory. This specific experience Dr Bryn Jones (right) outside Roy provided me with skills and experience that I will al be able to directly translate to our Brompton Hospital in London own intraoperative CMR facility. Having the opportunity to have a protected period of focused learning was invaluable as was the unlimite experts in cardiac MRI. In addition d access to world to the educational opportunities I was also able to establish significa with clinicians at both the Brompt nt professional links on and GOS with potential for sign ificant future international collabo Fortunately my family was also able rative research projects. to travel with me to the UK. The kids had some wonderful experiences inclu ding the Queen’s Jubilee celebrat ions that I am sure they will remember for the rest of their lives. Without the generous support of HeartKids Victoria I would not have been able to undertake this important train ing and I am extremely grateful for them providing me with this opportunity. I look forward to bringing these new ly acquired skills back to the Royal Chil dren’s Hospital and the children we treat. Dr Bryn Jones Paediatric Cardiologist The Royal Children’s Hospital, Mel bourne

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Adolescent Transition Youth Mentors

Hello there, we are Tim Demos and Rebecca Peters, the newest members of the Adolescent Transition Team at the Royal Children’s Hospital (RCH) Melbourne. We were both previous patients of the RCH for many years and are 19 years of age. Tim was diagnosed with Severe Haemophilia A as a baby and Bec was diagnosed with Cardiomyopathy and needed a heart transplant. We both now receive our adult care at the Alfred Hospital. We enjoyed our time at the RCH and have fond memories of the staff and doctors. But today we have stepped into new shoes, the shoes of youth mentors. Our role is to help young people who have a range of different health conditions, transfer into adult care successfully. We understand some of the challenges you are facing at the moment as young people, and will endeavour to help you overcome these by working with you to become more confident and independent with your health care as you transition from the RCH into adult health care. In our roles, we often start working with young people from the age of 15 and have been involved with patients from Haemophilia, Cardiology, Rheumatology, Immunology, Cystic Fibrosis and a number of other departments. We have regular catch up meetings with young people to chat about the transition process, as this process doesn’t happen overnight. Adolescent transition includes a range of topics that over time will help you become more independent and responsible for your health care. Don’t worry if this all sounds a bit overwhelming, as we are here to help you through the process and make it a successful and positive journey into this new stage in your life.

In the program we address areas like working towards increased independence, learning how to communicate with health care professionals (doctors, nurses, your GP, etc), gaining a good understanding of your health condition (signs, symptoms, effects of stress, alcohol, etc), explaining your condition to people (teachers, friends) and also practical matters such as how adult services are different from a children’s hospital, health cards, special consideration for VCE, drinking/smoking and other social issues. By engaging and participating in the Adolescent Transition Program, it will provide you with many great benefits both with your health and also on your personal journey. We have a huge range of information sheets and brochures on our website http://www.rch.org.au/transition. If you are looking for extra information or need some help, you can have a look at our website or contact us at the RCH. Tim works on Mondays and Wednesdays and Bec works on Tuesdays and Thursdays. Our discussions are confidential and because both of us have a chronic illness, we understand how you might be feeling at times, including your frustrations and challenges. You don’t have to feel alone or isolated in the journey to adulthood. We look forward to working with you so that your transition journey is a positive and meaningful one, and so you are prepared and confident to tackle the adult world head on! Hope to meet you guys soon! Tim Demos and Bec Peters

Adolescent Transition Youth Mentors The Royal Children’s Hospital, Melbourne

HeartKids Morning Teas at RCH Right: having fun at our morning tea with Starlight Captains and Clown Doctor. Far Right: enjoying delicious cake donated by Bake Boss.

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Congratulations!   .

New Babies

Celebrations

Congratulations and our very best wishes to all these

 families who have welcomed new babies in recent months. 

Jason & Renee have welcomed their daughter HK Amber Renee Bechaz on 29th December 2011.

Peter & Marika have added a daughter to their family when HK Thomasina Brasier was born 8th March. She is a sister to Remus and Rafferty.

 

 Glenn & Karlie and big sister Lilla have announced the birth    

  

Alan & Rohini would like to announce the arrival of a beautiful little girl HK Alira Clare Dobell born 9 June.

 

 

Joey Joey David Walsh, born 6 August 2008, has just turned 4 years old! He was born with TGA (Transposition of the Great Arteries), had major heart surgery at 9 days old and was back home in Tasmania within 3 weeks. Joey is a good big brother to his younger sister and his family are very proud of him.

Kevin and Karina are pleased to announce the early and safe  brother for HK Kevin, Jessica, Cooper and HK Sarah.

Russell & Candace Holmes would like to announce the arrival  of their brave little boy HK Kane Brendan on 13 August.

Kurt & Rachel have announced the arrival of their daughter HK Isabella Robertson who was born on 21st August.

 

Anthony & Julia announced the arrival of their daughter, Piper Rolando on 19th September. She is a sister to heart angel Phoebe, Alice and Spencer.

 

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.

  

 arrival of Sean Glenn Xavier Mason, born 10th August. A little

Darren & Narelle announced the arrival of their son on 27th  July, HK Jackson Fowler. He has a big brother Michael.

of HK Alfie McDonald on 13th May.

Clint & Dana are celebrating the arrival of their daughter, HK Lucy Hodson, born on 9th July.

David & Nadine have a new baby girl, HK Trinity Kukucka  born 5th July. She is a sister to Marlee, Elijah, Jerome & Elliot.

Noah Amarant ran out with the Hawthorn team for the Qualifying Final against Collingwood thanks to Starlight. Noah had a wonderful night cheering the Hawks to victory!

David & Christine announced the arrival of their daughter, HK Zara Powell on 3rd January 2012.

Noah

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Happy Birthday!

        

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

Eliza Eliza Newman celebrated her first birthday in September - a very special day for Eliza and her family after spending her first five months in hospital.


News from Tasmania Tassie Muscle & Classic Car Cruise Sunday 9th December 2012

3rd HeartKids Tasmania Car & Bike Show Sunday 24th February 2013

Positions Vacant: We are seeking volunteers to help with parking spectator cars and with Gate sales, for the

Aussiecoupes.net Proudly Present The HeartKids Tas Car & Bike Show 2013 Times needed: 9am-12pm, 11am-2pm, 1pm-4pm. Roughly 4-5 volunteers needed per group, happy to have people work with friends/family MUST BE RELIABLE, HONEST & PUNCTUAL. Email: xbfan@bigpond.com Venue: Josef Chromy Wines 370 Relbia Rd, Launceston, Tasmania

Carn the Kids

all Club we North Melbourne Footb the d an n Pla ase Le of Courtesy enjoy the first Carn kets for our families to tic 40 ve ha to d ille thr were y 7 July at Blundstone in Tasmania on Saturda t Ou y Da n Fu s Kid the Eagles match. lbourne v West Coast Arena for the North Me ending North’s nderful opportunity att wo a d ha ith Sm sh Jo Heart child Melbourne ning out with the North training session and run team on match day.

Photos from left: , Dad to HK Josh; Kids with Paul Smith Shannon from Carn the bell; Zie k s ambassador Jac Josh and Carn the Kid e Football Club; urn lbo Me y from North Josh with Brent Harve players the ground with the Josh running out on

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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 newsletter and watch the branch news on our website: www.heartkidsvic.org.au Select Members/Events/Branch Network-Coffee Mornings or follow us on Facebook for event dates.

Coffee Mornings

We would like to thank Audrey Cater for being the coordinator for Point Cook over the past few years and Irene Day for being coordinator for the Mornington Peninsula. They are both retiring due to work commitments and we thank them for their efforts as coordinators. If there is no suitably located coffee morning in your area, please contact Lynette on lynette.mccoullough@heartkids.org.au or 0418 548 879. We might be able to set up a new coffee morning in your area.

Coffee Mornings were held recently at Bendigo, East Bentleigh, Bundoora, Tullamarine and Geelong

Patch the Brave Heart Lion “Patch the brave heart lion” is a wonderful book written and illustrated by two heart mums. It is an excellent vehicle to promote discussion about emotions and challenges associated with feeling different, hospital procedures and family love. The book costs $15 + postage. You can organise to collect a copy from the HeartKids staff at The Royal Children’s Hospital by emailing heartkids@heartkids.org.au or you can order online at www.patchtheheartlion.com or email patchtheheartlion@gmail.com 10% of proceeds from sales will be donated to HeartKids Australia. William, pictured right, enjoys reading the book ‘Patch the brave heart lion’. William’s book review: ‘It’s a good book because Patch is a heart kid and he is brave like me and he’s special!! His name is Patch because he has patches around him.’

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Thoughts about the Patch book from Tania Howard: ‘It’s a story for heart families...We arrived home last night after routine tests at the RCH. In the mail was a special gift, the most beautiful book sent to us from ‘Patch’ the brave heart lion. Kobe was so excited to receive a present from Patch. We sat down and cuddled and read the book together (with tears and a wobbly voice) and at the end Kobe pumped up his muscles and shouted the five key words...Brave, Strong, Courageous, Patient and Caring! “Oh yes you are Kobe” I said. We continued to discuss the meaning of those five special words and we turned to the back of the book and were looking at the photos of the illustrator Karen Horsell and her little boy Joshua. Karen was the first heart mum I met, sharing hours together in the ICU expressing room. We shared many tears, joy, fears, etc, you know it, that scary rollercoaster ride!! Karen became my rock in those early days. Kobe then said to me, ‘I was Joshua’s big brother, the hospital big brother! I helped look after him and told him not to be scared. (Joshua and Kobe were about 3 days old haha!!) I am the big brother for all the babies and kids I meet in hospital!’ So to the many families we have met on our journey, your heart kids can look to ‘Big Brother Kobe’ or to ‘Patch’ the brave heart lion!! To Patch, we love you, you are the best! Heartfelt hugs, thanks and love to you all xxx’


Family Functions Candlebark Farm Camp Candlebark Farm was a place of fun and excitement for fifteen families over the weekend of 21st to 23rd September. HeartKids sincerely thank the Division 6 Kiwanis Clubs for sponsoring this family camp and also thank the committee - Bruce, Brian, Shirley, Natasha, Margaret and Lynette - for their work in coordinating the camp. It was a thrill for the kids to have a visit from the Police, SES and CFA. A big thank you to all the people who volunteered over the weekend, including Cam the photographer, Jenna, Julie, Sarah, Joan, Lauren, Karin, Nerissa, Christian, the Medical team - Jane, Tess and Charlotte - and all the Kiwanis volunteers. We were delighted to have HeartKids Ambassador Athol Guy as the guest speaker on Saturday. He concluded his presentation with the inspiring words from one of The Seekers’ songs - ‘Follow Your Dreams’.

Circus Quirkus 2012 Families reported that the Circus Quirkus show was very entertaining again this year and their children totally enjoyed the performance. We thank the Rotary Club of Preston and the many local businesses who enabled our families to receive free tickets to the show.

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HeartKids Australia News It was a very busy winter. I continued to meet with clinicians and sponsors to introduce myself, and I also undertook visits to the three children’s hospitals in NSW. In August the HeartKids Australia Board meeting was held in Canberra. Whilst there, our Chairman Brian Pereira, Vice Chair Dr Anne Fletcher, Treasurer Matt Tognini, and I had morning tea with Her Excellency Ms Quentin Bryce AC CVO, Governor-General of the Commonwealth of Australia. It was a very pleasant occasion which provided us the opportunity to tell our Patron about our recent activities. Representatives of HeartKids Australia also met with a number of politicians to raise awareness about the work of HeartKids Australia and to advocate for the needs of children with Childhood Heart Disease and their families. Meetings were held with The Hon. Peter Dutton, Shadow Minister for Health and Ageing; The Hon. Catherine King, Parliamentary Secretary for Health; Senator the Hon. Jan McLucas, Parliamentary Secretary for Disabilities and Carers, and Senator Mitch Fifield, Shadow Minister for Disabilities, Carers and the Voluntary Sector. The meetings went very well with all the politicians giving inprinciple support to the initiatives we discussed. Senator, the Hon. Jan McLucas has requested that we provide her with more detailed information about the needs of our families for her consideration, and has indicated her willingness to make changes if we are able to provide evidence of a level of need or type of care in our families that is not captured within the present assessment processes. Since our meeting, The Hon. Peter Dutton, Shadow Minister for Health and Ageing has accepted our invitation to officially open our Education Day in Brisbane on October 13. We have an excellent program for the day and on a recent trip to review the venue I discovered that South Bank Parklands is only 5 minutes

Phoebe “Ch

Heart Angel Phoebe

eeky” Rolando was born on Februar y 20th 2009, thirteen days after we fled the fires that destoyed our town of Kinglake. We knew she had a heart condition from Julia’s 20 week scan but the full exte nt of her problems were not apparent until Cheeky was bor n. Her first two open heart surgeries kept us at RCH for five months. When we got home and after man y months of teaching Cheeky that she was meant to drin k from a bottle and not rip her NG tube out every day, we had a perfectly normal, happy life. You could not tell that Phoebe had any problems at all. She was highly intelligent, vivacious, and full of life. She was a singer and dancer, a sho w off, and had everyone wrapped around her little finger. She touched the life of everyone she met. Phoebe could have been anything. When we returned to RCH in Apr il for her Fontan, we begged for the day to come so we could return to our 16

away from the venue. There is a man-made beach, various parks and picnic places. This is a great location for families to visit at no cost. HKA continues to advance the recommendations from the White Paper, including the recommendation about the provision of more equitable coverage of travel and accommodation costs for families required to travel for specialist care. HKA is working with students from La Trobe University, Melbourne who are undertaking a project to map existing travel and accommodation support, provided by government that is available to families with a child with CHD. Funding research into the cause and treatment of Childhood Heart Disease continues to be one HKA’s core activities. We are currently accepting applications for the 2012 Grants-inAid program (for funding in 2013). The applications will be considered by our Research Advisory Committee at the end of October with the final decision regarding funding to be made by the Board in November. We anticipate that the applicants will be advised of an outcome in early December. I recently attended the Kiwanis Convention in Penrith to accept a cheque for $30,000 towards the Grants-in Aid program. We are very appreciative of Kiwanis’ continued support of our work. Arrangements for HKA’s National Conference that will be held in Brisbane in October are currently being finalised. I am looking forward to the opportunity to exchange information and ideas with representatives of HeartKids from across Australia. Kind Regards, Jann Jann Kingston CEO HeartKids Australia

home, and let our beautiful princes s grow and become Daddy’s worst nightmare in her tee nage years with her long blond hair and beautiful blue eye s. Despite the best efforts of the gre atest cardiac team assembled in the world, Phoebe developed many complications from which she wou ld not recover. She died peacefully in our arms on Septem ber 12th 2012. We thank all of the cardiac doctors, surgeon s and nurses in Koala and Rosella, and all the staff at Hea rtKids that supported us through a very difficult time. Julia had a baby girl we named Pipe r on September 19th. Though she never got to meet her big sister we can already sense that she may be just as che eky as her big sister. Thank you to HeartKids, you have our eve rlasting gratitude and support. Anthony and Julia Rolando


Reflections Heart Angel Makayla Sue Cook 18/06/2012 - 21/07/2012 Forever and always Our precious baby girl You made us so proud We love you and we will miss you every day Until we are with you again Jackie and Leon Cook

Heart Angel Phoebe “Cheeky” Rolando 20/02/2009 - 12/09/2012 A butterfly lights beside us like a sunbeam, and for a brief moment its glory and beauty belong to our world: but then it flies again. And though we wish it could have stayed, we feel so lucky to have seen it. Author unknown

A Letter from Heaven When tomorrow starts without me, and I’m not here to see, If the sun should rise and find your eyes, filled with tears for me. I wish so much you wouldn’t cry, the way you did today, While thinking of the many things, we didn’t get to say. I know how much you love me, as much as I love you, And each time you think of me, I know you’ll miss me too. When tomorrow starts without me, don’t think we’re far apart, For every time you think of me, I’m right there in your heart.

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

Birth Dates Eliza Davis 3rd September 2010 Cody Kent 5th September 2003 Meher Pahwa 10th September 2011 Avelynn Wood 10th September 1999 Thomas Goodfellow 24th September 1999 Bryce Ibbs 7th October 1989 Kiara Ward 8th October 2005 Jesse Cotter 12th October 1990 Matthew Moran 20th October 2004 Alyssa Alsop 7th November 2001 Owen Crew 15th November 2005 Mia Campbell 16th November 2009 Georgia Morrison 16th November 1998 Frank Desensi 20th November 2004

Anniversary Dates Asha McNamara 10th September 2011 Eliza Davis 13th September 2010 Dylan Grilli 17th September 1994 Cody Kent 18th September 2003 Kiara Ward 21st September 2011 Jaime Ekberg 3rd October 2007 Finn Adair 11th October 2006 James Kelleher 22nd October 2008 Kiera Ziegenhardt 29th October 2010 Alyssa Alsop 11th November 2005 Meher Pahwa 14th November 2011 Thomas Goodfellow 29th November 2010 Zach Beadel 29th November 2010

Thinking of You

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

John Skinner 9 October 1936 - 10 July 2012 A member of the Doncaster-Templestowe Kiwanis Club and a loyal supporter and friend to HeartKids over many years. 17


‘Live Life to the Fullest’ Shaun’s Huge Party On the 26th May 2012 Shaun Wilson-Miller lost his battle with heart disease. Shaun was born with complex congenital heart disease and in his 17½ years he underwent a significant number of procedures including two heart transplants. Despite his condition, Shaun always maintained a positive outlook on life. In April Shaun was told by doctors that his prognosis was poor. Shortly after hearing the news he recorded a farewell message that was just intended for family and friends but the You Tube video went viral, touching millions of people around the world in England, Brazil, America and even Italy, with his courageous message to ‘live life to the fullest because you never know what’s going to happen’. Even though Shaun was unwell he asked his Dad to arrange a big party for him and his friends, so he could raise money for HeartKids Victoria. Cameron Miller contacted his comedian friends and Bev Killick along with Col Cameron from “The Hood” took up the challenge. Shaun was proud to be a heart kid and he loved the camps where he got to meet up with his friends. He wanted the party to be a celebration of his life because in his words, ‘It has been an awesome ride’. The party was held at Luna Park on 15 June - sadly Shaun never made it to his party but his family made the decision that the party had to go on to honour him. On arrival people were treated to the fabulous and amazingly dressed Star Wars 501st legion. If you could elbow past Darth Vader and the storm troopers you were enveloped in the smell of the BBQ! With a tasty selection of meats, salad, breads and condiments, it was hard to figure out what to do first - go upstairs and enjoy the festivities OR eat! As you went upstairs to where the main event was held it was an intimate area, but it had an amazing buzz. People were selling Shaun’s Party t-shirts as you entered, a great token from the night. The evening featured the cream of Australian comedy community known as “The Hood”. All organization for the party and volunteers to run the night came through “The Hood”. Rockwiz host Brian Nankervis was the MC and the evening featured non-stop entertainment from comedians, DJs, TV and radio personalities, and local rapper B-Mike performed his song “Stay Strong” written about Shaun. This was the song that brought the house down on the night. Another thrill for adults and children alike was rubbing shoulders (and taking photos) with celebrities from the entertainment and sporting worlds (including Melbourne Storm players) who walked amongst the crowds showing their support.

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In between the entertainment, guests enjoyed Luna Park’s rides, hi-tech digital interactive graffiti wall and a disco. Heartfelt thanks to the following sponsors and individuals who made the event happen – Alanta Daley and Luna Park, Fabulous Catering, Grin Creative, Jameson PR, Liquid Infusion, Pro Light & Sound, Imegen Printing, Ticketmaster, Everything Glows, A List Entertainment, James Penlidis Photography, The Hood, Bev Killick and Col Cameron (Event Co-ordinators), Dave Callan and Fiona Scott Norman-DJ’s, Megan Sayce & Kristina Hardner backup dancers from Spectrum Dance and Talent Agency, Brian Nankervis, Anthony Demasi, Doug Chappel, The Nelson Twins, Mick Neven, Lehmo, Greg Fleet, Chris Franklin, Vic Plume, 501st Legion, Chris Rogers SM, Kylie Sparrow-Admin, The 7pm Project, Charlie Pickering, Wil Anderson, Christian Williams, Susanne Miller, Graeme Brosnan, Karen Livingstone, many many comedians who got on board here and overseas to help with promotion, the incredible amount of publicity through Jameson PR on all Major television networks, radio and newspapers, Simplot, Top Cut, Westwood Wines incl Tallarida, Ross Estate, Lock & Key, Moppity, Six Foot Six, Solution Entertainment, Gavin Bell Caricaturist, Triple Hummer Limos, Mollison Communications, Sudden Exposure, MinuteMan Spencer St, Shifang Australia, Everyday Hero, and the 20 plus Hoodies who donated their time and energy for the month of organising and worked tirelessly on the night. The event was a very successful fundraiser for HeartKids Victoria. Shaun would be so proud of everyone who made that happen for him.


Bendigo Branch in action Cuppa For HeartKids at Bendigo

On 30th August the Bendigo Branch held a “Mad Hatters Tea Party” for the whole of Girton Grammar Junior School Students were asked to bring a gold coin donation and wear their craziest hat. Three hundred and fifty hot chocolates with a marshmallow were served and each student received a heart shape gingerbread and a packet of HeartKids stickers. The students participated in a HeartKids colouring competition. There were over 350 entries and prizes were given to a boy and girl in each year level for the best effort. It was a lot of fun and a big success, with $523 raised on the day. We send a special Thank You to Emelia’s The Saucy Australian who baked all the gingerbread biscuits and kindly donated them to us.

h their crazy students wit e th of e m uit So olate and bisc hats, hot choc

Teachers joining in on the action

Mr Matthew Maruff (right) Headmaster of Girton Grammar School and Mr Don Thompson, Junior School Headmaster, getting into the spirit of things

Thanks to these Bendigo busin esses for fundraising and promoting aware ness of HeartKids

Clockwise from centre: Darcy from the PreMix King who donated $1 from every sale totaling $747.00; Adam, owner of Bendigo Corner Store who made these heart shape biscuits and donated the proceeds from the sale of them, $200.00; Nicole and Shannon from Red Rooster Bendigo who raised and donated over $800 worth of products; The Golden Bean staff member - the store donated $500 and received over $400 in donations in 3 days;

Corey Prendergast (HeartKid father) right, with Wholesome Bean owner, Luke, who donated $2 from every coffee on the day raising $504 and also sold over $400 in raffle tickets in one day; Deb Evans & Brian Lawry, owners of Ray White Real Estate Bendigo - with a sausage sizzle and cup cakes for sale, they matched the sale of goods $1 for $1 raising over $1500.00; Staff from Pristine Dry Cleaners who donated $1 from every sale, with a total over $500.

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Acknowledging.... Run Melbourne

July 2011. Run Melbourne, presented by The Age was held on Sunday 17 or half10km 5km, the in More than 26,000 runners and walkers took part raised event The g. mornin Winter marathon challenge on a chilly Melbourne s. over $1,898,887 for a variety of charitie had 52 Thank you to our participants in Run Melbourne - the HeartKids team members and raised $18,028.27. including We would like to thank everyone who joined the HeartKids team Christian and on marath half the ran who Archer our ambassadors Glenn km. 5 ran Williams who

The Hon. Hugh Delahunty MP, Minister for Sport and Recreation (centre) with Hea rtKids Ambassadors Glenn Archer (left) and Christia n Williams (right) Photo courtesy of Christian Cordea ux, Miracle 8 Films

Sau sag e Sizz le

Inno vat ive Fun dra isin g RedLo ve Bar, in Swanst on Street, Melbo urne held a Weeke nd in Red fundra iser in June which raised a total of $2202. 70. Kim Grace from Launce ston condu cted a novel fundra iser, My Facebo ok Challe nge with the object ive to stay off Facebo ok for 30 days. Kim was succes sful and raised $2050. 00!

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Ray White Bendigo held a sausage sizzle fundraiser in May with all funds raised supporting HeartKids


....Special Efforts! Big gin and Sco tt Aw ard s Nig ht

One of our key sponsors, Biggin and Scott, invited our HeartKids Victoria Chairman and CEO to their awards night on 12 September. It was a fun night to celebrate the achievements of the Biggin and Scott team throughout the year. One of the features of the evening was an Auction Challenge where key auctioneers from within the group auctioned a range of items and the audience voted on their favourite auctioneer. All the proceeds of the auction, together with the proceeds of a raffle, were donated to HeartK ids. This amounted to over $3,500. We would thank Paul Stoner, the CEO of Biggin and Scott Corpor ate and Michelle Page, Advertising Manager, Biggin and Scott Corporate, for arranging our involvement.

ting HeartKids Danica Erard Millinery Hats and High Tea – Suppor Millinery Spring Collection

Left: ‘Winner Circle’ modelled by Melissa Buchannan Centre: Bright millinery modelled by Lucy and Michaela. Right: Danica Erard followed by her models.

The Danica Erard was recently launched on a Sunday afternoon in Deniliquin. 180 women travelled from far and wide to see Danica’s latest collection and the guests enjoyed the amazing high tea presented by Karen Benbow and her staff at The Crossing Cafe. As the beautiful models dressed in crisp white paraded over 20 of Danica’s new designs, her new season was officially launched. Danica kindly offered to donate all of the money raised from the Hats and High Tea raffle to HeartKids Victoria. With prizes donated from Country Racing Victoria, Heading Out Hair and Beauty, Ballarat Pressings, Caulfield Race Club and Danica Erard herself, the raffle raised just under $1000. Guests were happy to enjoy such an amazing day out while supporting HeartKids and their favourite Milliner Danica Erard. Extracts from the blog written by Kirrily Parry http://www.countryracing.com.au/blog/

New Merchandise Koala Badge - $4.00 The size of the badge is 25mm. Visor - $10.00 Navy blue/white embroidery T-shirts - $15.00 New kids range in organic cotton Sizes: 00, 0, 2, 4, 6, 8, 10, 12, 14, 16

HeartKids Donation Collection Tin Can be placed on the counter at a workplace, but are not to be used for door-knocking.

To order merchandise please contact Amy Emmett by phone: (03) 9329 0446 or 0411 552 264 or email: amy.emmett@heartkids.org.au 21


Thank you for your recent gifts... Ackers, Mrs P Adroit Insurance Group Anonymous Donations Arrowsmith, William and Samuel Batrouney, Christopher & Anna Bendigo Red Rooster Biggin & Scott Bourkies Bakehouse Bowden, Wayne Brennan, Annie Brown, Julie Brown, Rachael Bunnings Maribyrnong Sausage Sizzle Bury, David Cater, Shae Clark, Julie Compston, Julie-anne Cook, Mrs J Cornish, Mr B Country Women’s Association Cunningham, Lisa Damascus College Ballarat Davey, Peggy Derham, Tahlie Devers, B and S Dickson, Mr D Dingley International Hotel Dooley Quinane’s 1st Birthday/Christening Donations Douglas, Malcolm East Devonport Fellowship Eid, Joseph Emerald Fruit Barn Emerald Secondary College Erard, Danica Esposito, Mr Tony Farkashazy, E Farley, Damian Featherston, Kevin & Beryl Finnis, Matthew Firman, Darren Fleming, Carol Freemasons Victoria Frenkel, Jason Fuller, Melissa

Geelong Grammar School Geelong Lodge of Unity Gharazeddine, Ramsey Gift in memory of Matilda Farley Girton Grammar School Godfrey, Megan Goodison, Emma Grace, Kim Grand Hyatt Melbourne Gruber, Maria Gruppo Alpini Mildura Hammill, Bonita Heartbeat Galen Lodge Heartbeat Victoria - Grampians & District Group Helfenstein, R Hill, Margie Holmes, Mr Russell Howe, Sarah IGA Nth Melbourne Jones, Sylvia and John Justice, Hayley Kesterton, Janice Knox Tavern Lions Club of Box Hill Loch, David Macheda, Mrs C Makayla Cook Memorial Donations Marsh, Emma McCurran, Judith McLennan Kiwanis Club Melbourne Grammar School, Witherby House Miers, Chelsea Mills, Emily Mount, Adele Mrs McKay Memorial Donations My Sista Says NetApp Ocean Grove Uniting Church Old Mentonians Football Club Orfall, Elie Page, Vanessa Paige Berry Memorial Donations Paramasivam, P

Tahlie’s Donation Collection Eight year old, Tahlie Derham, from Covenant College, Geelong, wanted to raise some money for HeartKids.

She set up a collection box at school and requested donations from her friends. Tahlie raised $10.45.  Well done Tahlie!

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Phillips, Peter Phoebe Rolando Memorial Donations Rae, Wendy Ramundi, Liana Rattray, Rhonda Ray White Real Estate RedLove Bar Reeves, Mr William Robinson, Niall Royal Agricultural Society of Victoria Roylance, K Southern Cross Computer Systems Seing, Lynda Shaun Wilson-Miller Memorial Donations Shobhaa Paramasivam Memorial Donation Social Calendar St Catherine’s School, Junior School St Therese’s School Stagg, Mrs Sheila Starkie, Indiana Strugess, Lauren Sturgess, Mark Sutton, Kelly Tang, Peter & Joyce Terrill, Mark Tetoros, Katerina Thomas, Fr. Donald Thomas, I Thomas, Virginia Tinev, Mary Treacey, Dorothy Ulbrich, Mrs J Valet 5 Varro, Karyn Varro, Rosalie Walker, Benn L Walker, Jonathon Weatherson Foods Wight, Rhonda Williams, Leah Williams, Mr David Williams, Sheriden Wills, Kate Z Couriers

Izzy’s Fundraising Idea After seeing a HeartKids advertisement on TV, Izzy Thomas, aged 5 years old, was determined to do something to ‘help the sick kids’. Izzy made pom poms and sold them to her class to raise money for HeartKids. She raised $25 with her class Prep L at Maiden Gully Primary School. Izzy and her brother, Lincoln, are pictured here with some of the pom poms. Thanks Izzy!


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:

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Diary Dates

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Trains Day er - Box Hill Little Saturday 13 Octob neral Meeting   Thursday 25 October - Annual Ge 2012 ber - FunFlight  Sunday 4 Novem thering  ber - Fairy Folk Ga m ve No 10 ay rd Satu rm Day  mber - Myuna Fa  Sunday 11 Nove 2Sea ty Ci e Ag ay nd r - The Su Sun 11 Novembe  eadows ve  Sunday 18th No mber - Broadm  Car & Bike Show Day  HeartKids Golf r be m ve No Friday 23 of Magic  - World Festival  Sat 24 November n’s re ild r - Special Ch  Sun 25 Novembe smania , Launceston, Ta rty Pa as  Christm rty Pa as tm ris - Geelong Ch  Sat 1 December te) as Party (likely da  Xm rt ba Ho c De Sun 2 rty rne Christmas Pa  cember - Melbou De 8 t Sa e uis Cr  r Ca sic as Cl Muscle & Sun 9 Dec - Tassie k inside or   For more about these events chec tkidsvic.org.au  go to www.hear  

MELBOURNE METRO BRANCHES Bayside HeartKids Messagebank (03) 9513 9030 lynette.mccoullough@ heartkids.org.au 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 Pakenham Joanne Arrowsmith (03) 5967 7083 joarrow@bigpond.net.au Tullamarine Lynette McCoullough (03) 9333 1586 lynette.mccoullough@ heartkids.org.au Wantirna Janita Felici 0422 976 024 janitafelici@gmail.com REGIONAL BRANCHES VICTORIA Albury/Wodonga April Schubert (02) 6056 6448 0407 551 967 april_peter@internode. on.net

VICTORIA HeartKids Victoria

ARN: A0021470B CONTACT US ABN: 16 336 986 918 PO Box 803 Parkville Victoria 3052 HeartKids is an Auxiliary of The Royal Children’s Hospital, P: (03) 9329 0446 Melbourne, Australia E: heartkids@heartkids.org.au Facebook: HeartKids Victoria (including Tasmania) VISIT US Suite 310 / 55 Flemington Road North Melbourne 3051

www.heartkidsvic.org.au

Contact Details Bairnsdale Caroline Foard 0438 928 821 cfoardy@yahoo.com 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 hearts4heart - Support for Adults Heart Disease Tanya Hall 0426 240 636 TASMANIA Bendigo info@hearts4heart.net.au ast derg Burnie Natasha Pren hearts4heart.net.au Amanda Riley 0448 330 611 (03) 5441 8262 or 0421 590 169 KAWASAKI DISEASE amanda.riley1@bigpond.com goliathgroup@bigpond.com Shirley Mates (03) 9894 1257 2127 6431 (03) ne arla McF ma Gail Moa uca/ Ech akfn@optusnet.com.au u 0488 033 789 Tracey Hard Website: www.kdfoundation.org.a om nd.c igpo 4@b lane cfar them 0438 962 056 KABUKI SYNDROME tracnsteve@bigpond.com Hobart Stacey McKiernan Paul Hyland (03) 6247 8435 Geelong (03) 5275 1542 0418 561 504 Libby Gibson (03) 5250 2439 stacey@sakks.org paul.hyland1@bigpond.com 0411 057 905 Website: www.sakks.org libway2000@yahoo.com Launceston HYPOPLASTIC LEFT HEART Kylie Smith (03) 6393 6240 Horsham SYNDROME 0448 983 587 Gaynor Baker (03) 5384 2280 & SIMILAR CONDITIONS g.au s.or rtkid om hea nd.c th@ igpo .smi y@b kylie entr mtbcarp www.hearts-of-hope.org Leanne Amarant (Victoria) Latrobe Valley 453 955 0427 ner Wer (03) 5358 2945 Sophie INTERSTATE Leanneamarant@hotmail.com sophia.werner@bigpond.com at: Contact details Csaba Ovari (Tasmania) Portland www.heartkids.org.au 2503 (03) 6229 8169 Kerry Sluggett (03) 5523 csaba.ovari@hearts-of-hope.org 0418 312 320 UPS GRO ST ERE INT L SPECIA LONG QT SYNDROME (LQTS) ksluggett@iinet.net.au ILIES EMAIL FAM ED EAV BER Sherrie McDonald 0431 544 510 y Goulburn Valle u T POR SUP sherrie.mcdonald@heartkids.org.a Cheryl Alexander hearts-of-hope.org/ or ww. g.au ://w s.or http .sad www (03) 5825 4005 support/bereavment/intro.htm www.sads.org.uk/ chezalex70@bigpond.com T. LANTS NSP TRA RT HEA CARDIOMYOPATHY ASSN of AUS South Gippsland 182 714 u/ 0400 rg.a Belinda Holden Website: www.cmaa.o Kerrie Disney (03) 5182 5531 S KER EMA PAC 608 MUSLIM FAMILIES 0409 950 Mandy Tichelaar (03) 9728-6984 Lucy (Fatima) Hussain urme2@tpg.com.au 0430 738 820 22q11 Stawell Audrey Cater (03) 9394 7965 MULTIPLE BIRTHS Leanne Amarant 0420 500 905 April Schubert (02) 6056 6448 (03) 5358 2945 or 0419 864 412 audrey.cater@bigpond.com 0407 551 967 leanneamarant@hotmail.com april_peter@internode.on.net Wonthaggi Cath Methven 0429 325 643 catmet73@gmail.com


2012 Spring HeartKids Victoria-Tasmania Magazine