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Spring 2013

Quarterly Magazine for Victoria and Tasmania

Volume 23 Issue 3

* Hoffy’s World Record * HeartKids at The Block * M  ax’s Place Make-over

support

awareness

research

advocacy


Matters of the Heart -

Our Team

Chief Executive Officer

HeartKids Vic Inc Board 2012-2013

A message from Terry Hopkins ... Dear Friends and Members, It is with some sadness, but also a sense of personal excitement that I write this, my last, ‘Matters of the Heart’ column. Some of you may already know that I have decided to move into retirement and explore some things that I have never had the opportunity to pursue previously because of my daily work commitments. I have really enjoyed my three years as CEO of HeartKids and will remain on the Board where I will aim to continue to contribute each day to improve everything we do.

HeartKids Vic Inc Employees

I would like to thank the incredible staff that we have at HeartKids for their wonderful work, dedication and support, the Board, our sponsors and donors and all our members who touched me with your personal stories and courage. In closing, let me introduce our new CEO, Norm Hutton. Norm comes to us with a wealth of experience in leading charities and particularly those related to children. I have enjoyed working with Norm during our handover and am sure he will help us to turn our dreams for HeartKids into reality.

Terry Hopkins Introducing Norm Hutton ... Just a quick hi to all in the HeartKids family. I am thrilled to join the team in taking over from Terry as CEO. Already Terry’s thumbprint on the organisation is very evident and I would like to acknowledge his work and dedication over the last 3 or so years, and especially to the manner in which he has welcomed me. I have been very fortunate in my career having been part of a number of great organisations, including St John Ambulance, The Brotherhood of St Laurence and Variety the children’s charity. All of whom, along with HeartKids, make such an indelible impact on the lives of people and especially families. Recently I had an opportunity to join FSC Sherrie McDonald and some HeartKids parents at one of their morning teas at the RCH which provided a wonderful appreciation for me of the work done “at the coal face” when families need someone to turn to. What was also so very evident was the personal relationship and trust which existed between them. A great hallmark for an organisation such as ours to have. Whenever the occasion arises please don’t be a stranger. Warm regards Norm Hutton CEO HeartKids Vic/Tas

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HeartKids Vic Inc proud ly supports children wit h heart disease and their familie s throughout Victoria an d Tasmania. For Tasmanian enquirie s - please refer to the ba ck page for our Tasmanian Branch Co ordinators’ contact detai ls.

* Chairperson: Phil Riggio * Vice Chairperson: Natalie Palmer * Treasurer: Joseph Eid * Secretary: Melissa Karatjas * General Board Members: Chris Palmer Terry Hopkins Ashley Koenig Tania Tytherleigh Wayne Crofts

* Chief Executive Officer Norm Hutton 0409 874 452 norm.hutton@heartkids.org.au * Support Manager Tracy Stanley 0478 091 773 tracy.stanley@heartkids.org.au * Family Support Coordinators Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids.org.au Amy Heafield 0421 518 366 amy.heafield@heartkids.org.au * 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 Vic Inc. ledgement to HeartKids reprinted with an acknow ine do not imply published in this magaz Please note that articles HeartKids Vic Inc. of s view not reflect overall endorsement and may d stories represent nions expressed in chil Also note that the opi are specific to each ails det l dica me and that personal experiences to your child’s, ilar sim ear app y ditions ma case. Although the con cific information spe re mo ng uiri Parents req other details may differ. . gist ir child’s cardiolo should check with the

Mum Zoe Front cover: William Gonzalez and tesy Lakshal Perera, cour 8 page and r cove Photos on front www.lakshalperera.com information for this edition. Thanks to all who sent photos and - send to: heartkids@heartkids.org.au ome welc ys alwa are Contributions s. ts On Call for printing our magazine Thanks to Fuji Xerox and Documen es. imag al digit processing of some Thanks to Gordon Patullo for post


Coming Events HeartKids Annual General Meeting

Date: Thursday 24th October 2013 Time: 7.00pm Venue: Ella Latham Meeting Room #2, Ground Floor, at The Royal Children’s Hospital, Flemington Road, Parkville

Skydive for HeartKids

When: Saturday 26th October, 10am till 4pm Where: Great Ocean Rd, Barwon Heads Airport, 1412 Connewarre Rd, Barwon Heads 3227 This October we are going to new heights to raise money to support HeartKids - 14,000 ft to be exact! Friends and family will gather to watch and support their loved ones as they parachute over Barwon Heads. It will be a day filled with nerves, adrenalin and excitement followed by a BBQ for all to enjoy. So come and enjoy a great day out or if you too would like to raise money and get involved, simply register by visiting: http://www.everydayhero.com.au/Skydive_for_HeartKids Spread the word about this great event to support HeartKids.

Myuna Farm Day (courtesy of Kiwanis Club of Sunbury) Date/Time: Sunday 27 October, 10am to 2pm Venue: Myuna Farm, 182 Kidds Road, Doveton Entry to the farm is by gold coin donation (per family).

Some free train and pony rides, visit the animals, free sausage sizzle lunch. This event is for immediate family only. Bookings via www.trybooking.com/DALH Please RSVP asap and contact Lynette McCoullough for further details.

Grand Designs Live: A HOME SHOW LIKE NO OTHER Special Offer for HeartKids Members Grand Designs Live returns to Australian shores this October. The Melbourne Show is on 25-27 October 2013 at the Melbourne Convention & Exhibition Centre and features a bevy of attractions and more than 200 exhibitors. To find out more about Grand Designs Live, visit: http://www.granddesignslive.com.au HeartKids members have been offered a two for one ticket offer for the exhibition. Tickets must be pre-booked through Ticketmaster in advance to receive the discount offer – the promotional code is ‘HEARTKIDS’. This offer cannot be used in conjunction with any other offer and a maximum number of two adult tickets per promotional code can be purchased online.

5th Annual Broadmeadows Car & Bike Show Date/Time: Sunday 17th November, 10am - 4pm Venue: Penola Catholic College, 29 Gibson St, Broadmeadows Entry: $5.00 (Kids under 12 free entry with an adult) $10.00 per vehicle All vehicles are welcome; all proceeds donated to HeartKids Come & enjoy cars, bikes, sausage sizzle, kids entertainment, raffle More information: Luisa 0409 383 354 or Adam 0437 233 477

Christmas Party Launceston - Sun 24th November at The Special Children’s Christmas Party held in Hobart. RSVP by 25th October to kylie.smith@heartkids.org.au

Christmas Party Bendigo - Sunday 1st December Please contact Natasha Prendergast for details,T: 5441 8262, M: 0421 590 169 E: goliathgroup@bigpond.com

World Festival of Magic

Date: 21st December 2013 Show times: 11am or 2pm Venue: Melbourne Convention and Exhibition Centre Through the Lions Club of Melbourne Markets, HeartKids can order free tickets for you to attend the World Festival of Magic. Please register your interest on www.trybooking.com/DSHB and we will post your tickets when available.

In This Issue 3 Coming Events and Fundraisers 4-5 Max’s Place Refurbishment 6 HeartKids at ‘The Block’ 7 Hoffy’s World Record 8 William’s Story so far 9 Transition Support Services at RCH 10 Support Matters 11 Day of Surgery at RCH 12 Hearts & Minds Study Research Update 13 Janette McEwan’s Retirement 14 HKA News; HeartKids and IKEA 15 Reflections 16 Branch News 17 Tasmania News 18-19 Awareness, Celebrations, Fabulous Events 20-22 Donations and Fundraising 24 Diary Dates

Christmas Party Melbourne - 1st December

Date/Time: Sunday 1st December, 9.30am – 1.30pm Venue: Flemington Racecourse, 448 Epsom Rd, Flemington

This year we are attending the Christmas Party for Special Children. This event is open for HeartKids families with children under 17 years old. Those families will have already received an invitation by email or post and registration closed 16th October. If your family fits this criteria and you did not receive an invitation, please contact Lynette McCoullough to go on to a waiting list for cancellation. Only immediate family can attend. A four-hour stage show featuring many artists will keep the children entertained. There will be activities such as merry gorounds, jumping castles, face painting and much more. The children will be provided with free food, drinks and ice creams and there will be facilities for adults to purchase food or BYO picnic lunch. Humphrey B Bear will welcome Santa and after Santa’s arrival, the toy room will be open and each child will receive a present.

‘Old World Circus’ Gala

Date: Friday 7th February 2014, 6pm (7pm start) to 12am Venue: Peninsula Docklands, Shed 14 Central Pier, 161 Harbour Esplanade, Docklands Tickets: $250/ticket, Dress Code: Formal/business suit

Hosted by former Home and Away star Tim Campbell, the ‘Old World Circus’ Gala kicks off HeartKids Awareness Month and raises funds and awareness for HeartKids Victoria. You are invited to join us for this elegant event. Entertainment from Matt Hollywood, Acrobatica and more! Table and corporate sponsorship packages available - please visit www.hkvgala.org for details.

Significant Early Bird Discount for HeartKids Members:

For cheaper tickets, contact David on 0429 820 278 or email: info@hkvgala.org

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Max’s Place Refurbishment It took more than two weeks, 800 hours of work, hundreds of thousands of dollars donated in time and materials, and dozens of generous helping hands, but we’re there – and we are absolutely thrilled to reveal the results! For two weeks during August, a very special project was taking place in three small apartments across the road from The Royal Children’s Hospital, Melbourne. These three apartments, lovingly known as ‘Max’s Place’, provide short to medium term accommodation for families with children undergoing heart surgery and ongoing treatment at the hospital. The owners, Heather and Tim Round, took out additional mortgages on their Adelaide home in 2002 to set up the accommodation and support network after tragically losing their son Max at just 13 days old to a heart condition. They wanted to help other families going through hardships similar to their own so families can be near their sick children in a quiet, private space without the added stress of unplanned financial demands. After housing families for more than 10 years, Max’s Place was in need of a facelift – and that’s where Canny came in. HeartKids Victoria and luxury home designer and builder, Canny Group, joined forces earlier this year in the name of helping support families of children with heart disease. To launch this partnership, Canny, with the help of a range of incredibly generous suppliers and trades, took on the task of designing and project managing the refurbishment of Max’s Place, transforming the tired, well-worn apartments into comfortable and bright ‘home away from home’ spaces, to provide respite to exhausted, stressed families after long days spent at the hospital. “Once we heard about Max’s Place, Heather and Tim’s incredible story and the amazing, life-changing work of HeartKids Victoria there were no two ways about it – we had to do whatever we could to help”, said Canny’s Managing Director, Damian Canny. “The amount of emotional and financial relief that Max’s Place offers the families who stay there is enormous and makes such a big difference to their lives. We are absolutely thrilled to complete this project and to see the smiles on the faces of families that have moved in since makes it all worthwhile!” The brief wasn’t easy. Located within a larger apartment block with neighbours above, below and beside, major demolition or movement of services within the apartments was largely out of the question. The design needed to appeal to adults and children alike, and be hardwearing, with many families staying for months at a time. The focus for the team was on stripping the apartments bare and starting again to create a light, fresh and comfortable environment. With space at such a premium, creating effective, functioning kitchens and bathrooms was essential. All have been completely retiled, with new appliances and fittings installed. Simple and effective joinery and state-of-the-art, space-saving appliances are also standout features. User-friendly drawers have replaced old cupboards, and contemporary light fittings have added vibrancy. Natural light in these south-facing apartments was not abundant, so light and bright colours were applied throughout the living areas. Flooring, lighting and wall furnishings have all been replaced, and contemporary storage fitted. ‘Right size’ furniture has been introduced, creating a feeling of added space, all pieces selected with durability and ease of cleaning in mind. New robes and bedware improve the liveability in the bedrooms, the warmth and coziness creating a contrast from the hospital rooms where many daylight hours are spent for residents of each 4apartment.


Max’s Place Refurbishment To complete the project, almost all contents – from appliances, cutlery and crockery, right through to board games and colouring books – have been replaced, giving the apartments a lovely new home feel. Between 2 and 16 August Canny designed and coordinated the refurbishment of the apartments with the project value totaling more than $270,000 at no cost, and more than 20 of their suppliers and trades supported the project. It wasn’t just the bigger businesses lending a helping hand. Through an ongoing fundraising drive across their networks of clients, Canny staff, family and friends, and supporters of HeartKids and Max’s Place, Canny raised just short of a further $10,000 to go towards the charity refurbishment project – one of the most touching donations of all was $5 from a six-year-old girl who thought her weekly pocket money would be better spent on supporting this unique project. On behalf of Heather and Tim Round and the families who will be staying at Max’s Place in future, HeartKids would like to say a huge thank you to the Canny Group and the following trades and suppliers for all their generous donations of time and materials. We couldn’t have done it without you! • Maxa Build and Drake Construction – Carpentry • Abco – Waste removal • Number 1 Painting – Painting • John Brown Plumbing – Plumbing • Electech Data & Electrical – Electrical • GMD Architectural Joinery – Joinery/Cabinetry • Just Splashbacks – Shower screen and mirrors • RB Tile – Tiling • Exel-Seal – Caulking • Trustone – Stone Mason (benchtops) • Don Wiltshire Plastering – Solid plastering • Jay Q Plastering – Plasterboard install • Budget Tennis Courts – Fake glass for balconies • Southern Tiles – Floor and wall tiles • Custom Lighting – Blinds • NEFF appliances (Sampford IXL) – Stoves and ovens • Michaels of Brighton – Appliances • Reece Bathroom Life Armadale – Sanitary ware and sinks • Laminex – Laminate Board • Dulux – Dulux paint • Jardan – Various furniture items • Bowens – Carpentry materials • Dandy Choices for Polyfloor – Timber floors (floating) • Matchbox – Glassware, cookware and kitchen utensils • Temperature Design – Furniture • Lincoln Sentry – Cabinet hardware • Alfa Pak Supplies – Floor and carpet protection • IKEA – Furniture • Linen House – bed linen, towels, bathroom accessories • L&H Group – electrical supplies • Caesarstone – stone bench tops • Holly Pearce – hand-painted wall art Check out Canny’s Max’s Place refurbishment to see the transformation for yourself! Visit: www.youtube.com/canny2012

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HeartKids at ‘The Block’

Biggin and Scott Real Estate are wonderful supporters of HeartKids and we were thrilled that through their connections we were involved in this year’s series of ‘The Block’. Russell Cambridge was once again involved in the series as the auctioneer for Madi & Jarrod’s apartment. Some of our families were invited to an exclusive viewing of Madi and Jarrod’s apartment. They made themselves at home, enjoying Jarrod’s hospitality and meeting George from level 3 at the sneak preview.

Biggin & Scott Awards Dinner On the evening of 15th August Biggin and Scott held their annual awards night. The evening featured the presentation of various awards to members of the Biggin and Scott team. A highlight was Russell Cambridge winning auctioneer of the year and his Richmond office winning a number of awards. HeartKids has a strong connection with Russell as he brought us into ‘The Block’ where, with his help, we were able to receive quite significant media coverage. Russell was also the auctioneer on ‘The Block’ who auctioned the apartment renovated by Madi and Jarrod and which was used to raise funds for HeartKids. A feature of the night was a presentation of $30,000 to our CEO to be used to buy specialised equipment for MonashHeart.

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HeartKids had a marquee at both Open for Inspection days – raising awareness and selling cupcakes made by Amanda from Sweetest Obsession. We received fantastic coverage during the final show – vision of Madi and Jarrod visiting the Koala Ward at The Royal Children’s Hospital and the HeartKids banner prominently displayed as Russell Cambridge conducted the auction. Biggin and Scott generously donated their commission to HeartKids. A massive thank you to Biggin and Scott, Russell Cambridge and Madi and Jarrod.


Hoffy Breaks World Record and Raises $80,000 for HeartKids Julie Hoffmann is truly inspirational. On 7 September she entered the Guinness Book of World Records after completing 7,684 burpees in a 24 hour period, raising over $80,000 for HeartKids. The atmosphere in the room at The Ferntree Gully Hotel was electric as the crowd waited for Julie, and her entourage, to burpee their way down the Burwood Highway (with police escort) to then complete the final two hours of the challenge. Everyone in the room felt Julie’s physical pain as she completed the final hour, and those last few burpees. Tears were running down people’s faces: tears of joy, pride, and of course sadness that Julie’s niece was not there shouting on those final words of encouragement. Julie’s niece is the reason why Julie and burpees go hand in hand: Stacey sadly passed away in 2007 whilst waiting for a heart transplant. To commemorate what would have been Stacey’s 18th Birthday, last year, Julie set a goal to raise a minimum of $18,000 for HeartKids. To achieve this she attempted to set two World Records. The first was to complete 1500 burpees (which are the most challenging full body exercise there is) in 1 hour and the second was to beat 36 burpees in 1 minute for the second record. This took place on Saturday April 14th 2012, in front of approximately 750 people. Julie’s original goal was to raise $18,000, but ended up giving a $52,000 donation! Oh, and she became the holder of the World Record for 40 burpees in 1 minute! So again she is a World Record Holder, has smashed her fundraising goal and stated, ”I’m moving like I’ve been hit by a concrete truck then it’s reversed back over me BUT I’d do it again in a heartbeat if it helped those beautiful kids. I hope the last 24 hours has made a difference to some of them in some way”. Julie Hoffmann, from everyone at HeartKids, thank you, thank you, thank you!

Ashtyn’s Big Donation

Ashtyn Leslie had a disco for her 6th birthday. She invited all the preps from her school, Tecoma Primary School. Rather than receive gifts she requested a donation from each person attending. On Saturday 7th September, Ashtyn presented a cheque for $700 to Julie Hoffmann after she broke the World Record for completing the most burpees in 24 hours. Ashtyn is pictured at left with her big cheque, and right, with Julie Hoffmann.

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William’s Story so far... It took three hours and twenty minutes for our little miracle, William Daniel Gonzalez to enter this world on 3rd October 2012. He was in a real hurry to meet us! It was a relatively uneventful labour in the grand scheme of things and we were calm, even though we knew the seriousness of William’s condition and had run through every possible outcome in the months leading up to his birth. We fell in love the second William was born and then the minute he screamed, it was such a relief. William has half a heart, technically called Hypoplastic Left Heart Syndrome.

happen. We were told William would be one of the typical cardiac babies that would bounce from PICU to the ward and back again several times. We were told William would stay in hospital until his scheduled second surgery. Well, our little warrior proved them all wrong! William continued to recover well - he was gaining weight, feeding and getting stronger every single day. At nine weeks old we brought our precious baby boy home! It was three weeks before Christmas - what an amazing early Christmas present we received!

We were very lucky to have four hours of cuddles after William’s birth before he was packed up by the NETS team and transported to RCH. What an excruciating six hours it was for me waiting to be discharged and waiting to be able to see my little boy again. The one thing I was holding onto was knowing that Dave, William’s Dad, was with him the whole way. Dave never left his side. From day one, with the unwavering support of family and friends, Dave and I knew our little boy would survive. Despite being born four weeks early and being a tiny little thing, weighing in at just 2.45kgs, and even with our surgeon not giving us great odds, William’s determination and strength shone through. On day 2 of life at 8am we said “see you soon little man” as William went in for his first open heart surgery. Twelve hours later we got the phone call that every parent wants to get but is so nervous to answer. The surgery was finished and William made it through. We could see him in a few hours. Not much more was said and it was those last two hours that were the worst, as all we wanted to do was see our little boy. Then we did and “Wow”, I was overwhelmed by the sight of my tiny two day old baby boy, with all the machines, all the drugs, all the drains, tubes, wires. All I wanted to do was pick him up, hold him, take him far, far away and make it all disappear. This wasn’t fair, this wasn’t how it was meant to be. The power of a mother’s love and pure instinct is immeasurable. Dave and I spent every day by William’s bedside. William spent six weeks in PICU with some complications and recovery was slow. That’s just how it is with our little warrior - slow and steady wins the race. William made it to Koala ward at seven weeks old which was a huge achievement and an occasion we thought wouldn’t

We were overjoyed to have William home but we were also very nervous. We cherished every day that we had William home between his first and second stage surgeries as we knew just how lucky we were. At twelve weeks old, William was admitted again to RCH for his second open heart surgery. This time it felt just that little bit harder, I guess because we had had him home and we had felt like a real family away from the hospital. So we were again saying “see you soon little man” as we handed over our baby boy to the nurse, put our faith again into our surgeon and waited. Thankfully William’s second surgery didn’t take anywhere near as long as his first, so after seven hours we got that phone call again. It was another successful outcome. William’s recovery after his second surgery was a stressful one, as once again a few complications arose. But like the little warrior William is, he pulled through and within days he was back to giving us cheeky smiles. Ten days after William’s surgery we brought our little boy home again. Now it was really time to start living! William’s recovery at home was long and slow. We went home with the nasogastric feeding tube, the feeding pump, several different medications, but most of all we went home with hope. We had just gone to hell and back over the last three and a half months so now we felt like it was time to live. I write this story at the same time as I plan William’s First Birthday Party! Exciting times are coming up! We have been extremely blessed with William. He is really doing well for a little boy with such a complex heart condition and we celebrate every little milestone he reaches. We cherish every day we have with him, we cherish every single giggle and smile. William lights up our lives, he lights up the lives of so many people out there - people who have met him and even people who have just simply heard his story. Written by William’s Mum, Zoe

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Transition Support Services at RCH What’s been happening in Transition? Recently I had the pleasure of attending the HeartKids annual Education Day in Adelaide. It was a fantastic opportunity to present on Transition at The Royal Children’s Hospital (RCH) Melbourne and the supports available for young people and families who are transitioning from paediatric to adult health care. As one of the youth mentors in the Transition Support Service, I was able to share my previous experiences as a patient at the RCH for over 10 years, to explain the challenges that I found with my own transition to adult care and to highlight my passion for this role. It was the first Education Day I had attended and I learnt so much from others who presented and also from many of the people who attended. My journey began when I was diagnosed 20 years ago at six weeks old at Alice Springs Hospital. The first signs of my heart condition occurred when my parents were returning to Darwin and suddenly things took a turn for the worse and I became very ill. My parents eventually arrived at Alice Springs hospital, with a very sick, blue baby in their arms not knowing if I was going to make it through the night. Paediatric cardiologist Gavin Wheaton was called in and diagnosed my condition (Dilated Cardiomyopathy) and ultimately saved my life. I then grew up in the Northern Territory with my younger sister, Sarah (4yrs old at this time), in a place called Groote Eylandt, which is a remote island in the Gulf of Carpentaria (one and half hours by plane to Darwin). When I was 6, my mum was pregnant with my little brother and our family’s life was turned upside down when we travelled to Darwin for a family holiday and I became sick with Tonsillitis. Unfortunately, things went downhill from there and I was transported to Melbourne where I was listed for a heart transplant in 1999. Six months later, after my 7th birthday when I was at school, mum came into the classroom and cried, “We have to go to the hospital now. You’re going to get a new heart Bec”. I was adamant that I didn’t want to leave class that day because we were doing art and art class was my favourite! I received the gift of life in November 1999 and two weeks later my brother was born just down the road at the Royal Women’s Hospital. It was a chaotic time for my family. We remained in Melbourne for some time after the transplant and then we were given the good news that we were able to return home to Groote Eylandt where we had left 12 months earlier to go on a holiday. Since my transplant almost 14 years ago I have been really well and making sure I make the most of what has been given to me. After I turned 18, the time came for me and my family to leave the RCH - it was an emotional goodbye after 10 years of care. I transitioned to the Royal Perth Hospital as that’s where my family moved after Groote Eylandt. It was hard at first transitioning to adult care but once I learned my way around the hospital,

it became a bit easier. About a year and a half ago after my first year of uni, I moved to Melbourne and then transitioned from Royal Perth Hospital to The Alfred which is where I receive my care currently.

The Royal Children's Hospital Adolescent Transition Team - Rebecca Peters, Tim Demos and Evelyn Culnane

The transition to The Alfred was scary at first as it was such a big hospital and I was doing it alone. I didn’t know any faces or where to go at first, but I was soon put at ease when I met the staff at the heart transplant clinic who were really friendly and welcoming. It takes a few appointments to get used to the way things work but once you learn the routine it becomes easy. The Transition Support Service recently collaborated with HeartKids, cardiology teams at the RCH as well as the adult services to produce a cardiology brochure about transition for all cardiology patients. The brochure looks at the differences between the major hospitals that cardiology patients may transition to and has information about important things like transport, parking, clinic structure and so on. The brochure, generously funded by HeartKids, is called “Get Pumped for the Future – Your Continued Cardiology Care”, so keep an eye out for it, as it will be available around the Hospital shortly. It is exciting times for adolescent heart transplant patients at the RCH, as recently both cardiology teams have worked with Transition to set up a Young Adults Clinic at The Alfred. The Alfred is where heart transplant patients will transfer to for their adult care. As it is such a big hospital, a need was identified by The Alfred for tailored, specialised care for adolescent heart transplant patients. The first Young Adults Clinic at The Alfred has been scheduled for October 2013. Prior to this clinic, the RCH and Alfred heart transplant teams will run two joint clinics at the RCH. This transition process has been set up to prepare and support patients like me for what might otherwise be a ‘scary’ time. I am excited to attend this new clinic with other young heart transplant recipients. Until the next issue, I look forward to sharing more exciting news from our Transition Support Service Team at the RCH.

Cheers, Bec Rebecca Peters Adolescent Transition Youth Mentor Transition Support Service

Education Youth Forum

On 26 June the first education based youth forum was held for young people with chronic health conditions/disabilities and it was a huge success! The education forum was hosted by the RCH Adolescent Transition Program, Ronald McDonald Learning Program and Capital City Local Learning Employment Network. The MC for the forum was Dani Venn, who was a previous Master Chef contestant! Young people from years 10-12 and older came along and enjoyed the opportunity not only to meet other young people going through similar challenges, but to see what resources and programs were available to support them through high school and beyond. The highlight of the forum was keynote speaker, Sam Bramham OAM. Sam is a paralympian who has won many medals in his swimming career but not without many challen ges and hard work. He inspired the audience to achieve their own goals, no matter what their challen ges may be in life. HeartKids and hearts4heart shared an information stall at this wonder ful event and we look forward to attending again next year! The photo shows Amy from HeartKids and Tanya from hearts4heart. 9


Support Matters In August the Family Support team attended the HeartKids Australia Conference in Adelaide. We commenced the new National Training and Development Program for Family Support Coordinators which has been funded by a $50,000 donation from Charter Hall. The training was conducted over two days by Health First Training Network. We really appreciate the opportunity to undertake training - professional development helps us individually, as a team and the families we support. On 25 August we attended “CHD A Lifelong Journey’, a one-day seminar for families affected by CHD. The seminar was broken up into sessions covering different stages of the CHD journey. • Session 1 CHD – a Diagnosis • Session 2 The early years – family and education issues • Session 3 Growing up – CHD in adolescence and young adulthood • Session 4 From paediatric to adult health services: what makes it a smooth and effective transition? It was a very informative seminar with expert speakers who were all very passionate about their work. Please advise us when your child is in hospital. Due to patient privacy and confidentiality we don’t always know when you are in for appointments, procedures, surgery or emergencies. We only visit PICU (Rosella Ward) and NICU (Butterfly Ward) on request by families or referral by RCH staff. The Family Support team’s contact details are listed on page two of the magazine or you can let your nurse know that you’d like to see someone from HeartKids. We are here to help ease the burden of a stressful journey so please don’t hesitate to contact us. We hope to see you at our morning teas held 10:30am – 12.00pm on Tuesdays and Thursdays in the third floor Parent Lounge at The Royal Children’s Hospital. We look forward to seeing you at a support event soon – please check the Diary Dates and Coming Events sections of the magazine and the Events Calendar on our website to see what’s on. The Family Support Team

Hospital Happenings Craft Circle Workshop

Scrapbooking was the theme of the September Craft Circle workshop conducted by Meri. Attendees made scrapbooking pages and birthday cards. The workshops are an initiative of Elgin Lane Studio and are held monthly for Koala & Rosella ward parents at The Royal Children’s Hospital.

Father’s Day Celebrations A HUGE thank you to The Cake Angels for their contributions to our Father’s Day bags beautifully packaged homemade fudge and amazing Father’s Day cookies! We distributed the bags to Dads in Koala & Rosella wards at The Royal Children’s Hospital on Father’s Day.

Nurse of the Month Award HeartKids sponsors the Nurse of the Month Award which recognises the work of our wonderful Koala ward nurses. Congratulations to these nurses recently awarded Nurse of the Month: July - Emma Lew; August - Kelly Bubb; September - Jane Carroll.

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.

Support at MonashH

eart

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

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!


Day of Surgery at RCH Your child’s elective surgery date will be coordinated by the Cardiac Coordinator, together with the Cardiac Surgery administration team. You will receive a confirmation phone call late in the afternoon on the day prior to the surgery. During this phone call we will confirm fasting times, and what time to arrive at Reception J (Day of Surgery Unit). On the day of the surgery you should arrive at Reception J at the specified time, and your child will have been fasting. Upon arrival, the Day of Surgery Administration Team will enter your details onto our electronic system, and ask you to sign an admission form. Once this has been done, a member of the nursing team will collect you from the waiting room to do a “Nursing Admission”. This will involve attaching two ID bands, checking your child’s temperature, asking about allergies, checking that consent has been signed, checking that your child has fasted appropriately, asking which (if any) medications your child takes, asking about any implants or prostheses your child may have (like hearing aids), and making sure that your child is not wearing any nail polish or make-up, and hair is tied back. When the nursing admission is complete one of the doctors on the anaesthesia team will come to speak with you. After introducing themselves, the anaesthetist will check whether you have any questions about the day. He/she will be keen to discuss any concerns you may have about the anaesthesia and pain management for the cardiac surgery, including any issues that may have come up in previous anaesthetics that your child or members of the family have had. The anaesthetist will also want to review your child’s medical condition including any current issues such as coughs or colds. Together you will make an anaesthesia plan with the goal of minimising distress for both you and your child. This plan will include the details of when you will separate from your child and what further preparation might be required before the anaesthesia commences. For children who are anxious or fearful of anaesthesia, this may involve arranging for sedative premedication to be given to your child by the nursing staff before the actual anaesthetic starts. This will usually be a mixture to drink. The pre-admission clinic day, which is usually a few days before the surgery, can also be a great time to raise any concerns that you have about anaesthesia, allowing more time to make arrangements.

From the anaesthetic review you will be moved to the “Pre-op Hold” area, which has cots or trolleys (and pillows if required) to get ready to go to the operating room. You will be given some anti-bacterial wipes to bath your child before theatre (they will be warmed up so that this isn’t uncomfortable for him/her), and then you can help him/her to get changed into a gown. The Pre-Op Hold nurse will then perform a double check of some of the tasks of the original nursing admission, including name bands, allergy check, and consent. A member of the surgical team will come by to ask if you have any last questions, check that your child’s ID band matches the consent, and ask you to confirm that your signature is on the consent form. When the operating room is ready to bring your child to theatre the anaesthetist and an assistant will come to Pre-Op Hold to collect them. You will of course be given the opportunity to give your child a kiss and cuddle before they leave, and whatever plan has been made with the anaesthetist will take place for separating from your child. Once you have said goodbye a nurse will show you the way out of the Pre-Op Hold area. We recommend getting some fresh air and trying to eat something while you are waiting for the surgery to be completed. When the surgeon has finished he will call you on your mobile telephone to let you know how the surgery went. He will also advise of how long it will be before your child is moved to Intensive Care or Recovery, and when you can see him/her. Once your child has been moved to the ICU/ Recovery the nurses and doctors need about 90 minutes to take handover from the surgical team, check how your child is going, and settle him/her into the unit. Once your child has been settled you will be able to visit him/her. You will be directed to either ICU (Rosella Ward) or Recovery. Each area has a door bell and intercom. The staff will release the door and invite you in, or suggest that you wait in the parent’s room if your child has not arrived or been settled in yet. The nurse looking after your child will introduce himself/ herself. There will be a lot of drips, machines and pumps around your child, so the nurse will explain to you what these are for and how the machines work. Article written by Andrea Martin Cardiac Co-ordinator Cardiac Surgery Unit, The Royal Children’s Hospital

The “team” involved in the patient journey on day of surgery. Team tone members from L-R are Belinda Bor aw Che r), (Cardiac Surgery Administrato Ian se), Nur Shya Lim (Cardiac Theatre (Unit Smith (Anaesthetist), Elise Brown e Juli ), Unit ery Surg of Manager, Day Martin rea And k), Cler s sion mis Marino (Ad (Cardiac Coordinator).

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Research Update The Hearts and Minds Study In 2005 in Melbourne and Auckland, The Hearts and Minds Study commenced. This involved recruitment of newborn infants with congenital heart disease (CHD) who were expected to undergo surgery within the first two months of life. Thanks to the generosity of 153 families, a vast array of data was collected to help assess the brain development of these children over the ensuing years. It has taken several years to process all of this data but we are pleased to report some of the early findings which have now been published in major international medical journals (referenced below). The children underwent assessment using brainwave monitoring and brain MRI scans in the first three months of life. At two years of age, 125 of the children were assessed for progress in their development. Perioperative amplitude-integrated EEG and neurodevelopment in infants with congenital heart disease. Julia Gunn, John Beca, Rodney Hunt, Monika Olischar and Lara Shekerdemian. Intensive Care Medicine (2012) 38:1539-1547. The infants enrolled in the study underwent brainwave monitoring (aEEG) before, during and for 72 hours after their initial cardiac surgery. This had never been done in such a comprehensive manner before, but other researchers had shown that the aEEG monitor could predict which children with brain injury at birth (without CHD) were more likely to have longer term problems with their brain development. We discovered that 30% of the infants had some seizure activity detected on their brainwave monitoring but only a very small number were detectable by the staff looking at the child rather than the monitor. This supports what we know about how difficult it can be to see seizure activity in young infants, compared with older children and adults. It is less well understood whether treating these ‘electrical seizures’ is of any benefit to the child and other studies are currently underway to try to answer this question. Most of the seizures seen occurred in the hours and days following surgery. However, when we looked at the children’s two-year developmental outcome, there was no difference in the scores of the children who did have seizures compared with those who didn’t. As we would expect, the background electrical brainwave activity was flattened by the anaesthetic medications and cooling that occurs during surgery to protect the heart and brain. The background activity had returned to normal by 24 hours in 77% of infants and by 72 hours in 90% of patients. The children who took longer for their brainwave activity to return to normal, on average had lower developmental scores at two years and were more likely to have severe delay in their thinking, language and/ or movement assessments.

Livewire.org.au Livewire.org.au is the safe online place for young people aged 10 to 20 years old, living with a serious illness, chronic health condition or disability, and their siblings. Our fully-moderated chat room provides members with the opportunity to connect and share experiences with other young people with similar conditions, from all over Australia! In the chat room, these adolescents encounter an opportunity for friendship, fun and connections. We also have heaps of chat guests who visit us for chat events, too! Sweet!

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New white matter brain injury after infant heart surgery is associated with diagnostic group and the use of circulatory arrest. John Beca, Julia Gunn, Lee Coleman, Ayton Hope, Peter Reed, Rodney Hunt, Kirsten Finucane, Christian Brizard, Brieana Dance and Lara Shekerdemian. Circulation (2013) 127:971-979. The infants studied also underwent MRI brain scans before, and one week after, their surgery and again at 2-3 months of age. Brain abnormalities have been widely reported in children with congenital heart disease, but nobody had investigated whether these abnormalities actually have any impact on the developmental outcome of the children. Almost half of the infants in our study had tiny ‘dots’ of injury on their brain scans, mostly on the early scan after their surgery. This was especially related to the type of heart problem the children had, the surgery they underwent and how unwell they were immediately after surgery. Surprisingly (and reassuringly) the injury seen on the brain scans in the first three months of life did not translate into developmental problems at two years of age. In fact, we found that the more important factor was how well developed the brain looked before the infant underwent surgery and at 2-3 months of age. These two aspects of the research have shown us how resilient the brain is to injury (like the children themselves). However they also emphasise how important it is to look at how young brains develop over time. This information may help us in the future to predict which children are likely to have later developmental problems and potentially intervene earlier to minimise this risk. Neurodevelopmental follow-up We have just submitted for publication the details of the twoyear neurodevelopmental assessments so I hope to be able to update you on these results in the coming months. In the meantime, reassessment of the same cohort of children is now being undertaken at six years of age. I don’t need to tell this audience that it is the long-term progress of the children that really matters most. This is a large body of work that obviously takes many years to produce the results that will help us to improve the outcomes of children with CHD. Of course it would be impossible without the goodwill of the families who agree to include their children in research studies at the most stressful times of their lives, in the hope that future families will benefit from the knowledge gained. Dr Julia Gunn Hearts & Mind Study

As one of our members said: “On Livewire there is always something to do, read or a competition to enter. There is always someone to talk to as well, whether it’s another member or one of the awesome chat hosts. I have made lasting friendships on livewire and now I know there is a whole community behind me, supporting me.” Livewire.org.au also provides awesome articles and videos; the groups discussion pages; the opportunity to blog; and the ever popular Livewire Music Player, featuring all the latest hits, as well as the classics! Our regular competitions also give members the opportunity to score themselves some epic prizes. Any eligible patients can join livewire.org.au by going to www.livewire.org.au and clicking the ‘Join Livewire’ button!


Congratulations! 

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New Babies

Farewell Janette 

 

Congratulations and our very best wishes to all these

 families who have welcomed new babies in recent months.   Natalie and Damien Davis welcomed Kalon Davis, brother to  Nikkitta, Sierra and heart angel Eliza on 9th May, 2013.

Janette McEwan’s imminent retirement was acknowledged on 12th June 2013 with a surprise dinner held in her honour and attended by many past & present Royal Children’s Hospital staff who had worked with Janette over her many years at the hospital. As Janette is a Carlton supporter, the evening was held at her beloved Carlton Football Club and although it was a cold, wet and windy night, this didn’t dampen the mood inside.

Lee Collins & Tiffany Podger proudly announced the arrival of their son, HK Ethan on 14th May 2013.   Cameron Agnew & Rianda Mills announced the arrival of   their son, HK William on 17th May 2013.

 Chris Wilson & Melissa Kruber welcomed their son HK Brady  on 20th May 2013.

Emily and Andrew Stove are excited to announce the safe arrival of HK Evie Mae on 1st June 2013, little sister for Bella.   Zane & Danielle Clarke announced that their son,   HK Cameron was born on 11th June and he is a baby brother to Cailin.

Scott Branch & Nicole Dries proudly announced the birth of

 their son, HK Lukas on 18th June. Lukas is a baby brother to  Taniesha.

Martin DenHeyer and Emma Biggin are thrilled to announce  the early but safe arrival of Charlotte Ruby on 20th June,  2013. A little sister for Jackson and HK Maddison.

Karen and Mark Abraham are thrilled to announce the birth  of HK Alisha on 26th June 2013.   Justin & Kylie Wilson announced the arrival of HK Lucy on  28th June 2013, who is a sister to Zoe, Oliver and Archie. 

It was time to celebrate Janette’s commitment to the children both on the cardiac ward (7 East & 7 West) and Cardiology Outpatients. In the last twelve years she has been in charge of ambulatory cardiac care at the RCH. Many children and their families who visit the Cardiology outpatient department (both at the old and new RCH) have had some contact with Janette - either by meeting her face to face in clinic, during a sedated echo, in pre admission clinic or by organising their appointment in some way.

 Paul & Rebecca Perry have welcomed the arrival of their son   

HK Rusty, on 14th July 2013, a brother to Dustin & Lila.

Mason & Jana Williams are proud to announce the birth of  HK Stephanie, born on 16th July 2013, little sister to Abigail.

Matthew & Cathy Honore have announced an addition to  their family of their son, HK Toa, born on 22nd July 2013. He  is a baby brother to Caleb and Joshua.

Bradley Palmer & Cassandra Lamb announced the arrival of

 HK Archie, on 24th July 2013. He is a little brother to Kintara.   

The Fisher family has welcomed a new addition - Madeline was born on 25th August, a baby sister to HK James and Nicholas.

 

Laetitia & Daniel Ferguson would like to announce the birth  of Kalahnii De’ja on 3rd September. Kalahnii is a sister to  Shaniqua, Trey, Rhykha, HK Shailah & HK Djarhyn.

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

If you have a new addition to your family (heart child or sibling) and would like the baby’s birth announced in the newsletter, please send us the details.

 

Happy Birthday!

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

In earlier years Janette worked as a registered nurse in ICU in the 1970’s and in 1983 she took on the role of Charge Nurse in the Cardiac Ward 7 East. Janette has been a valued supporter and advocate of HeartKids in a variety of ways over the 23 years since 1990, in fact she was Guest Speaker at HeartKids 1st Annual General Meeting in 1991 presenting the ‘Role of Parents in Hospital’. HeartKids supported this celebration of Janette’s remarkable working life with a beautifully decorated cake and we all wish her well in her retirement.

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HeartKids Australia News We are very excited about our new partnership with Woolworths who will make a donation to HeartKids for every pack of Select Once Upon a Time nappies sold Australia wide. This new partnership will fund a new Outreach Program to allow HeartKids to expand their family support services beyond the hospital walls into the community, including regional, rural and remote areas. This support will make a huge difference to families facing the challenges associated with Childhood Heart Disease. The HeartKids’ Annual Conference and Education Day were held in Adelaide recently. The Education Day, which was entitled “CHD: A Lifelong Journey” was conducted as a shared initiative of HeartKids Australia and HeartKids South Australia. The one day seminar provided the opportunity to hear from leading researchers, clinicians and other experts involved in the provision of care and support to those affected by Childhood Heart Disease (CHD), parents of children with CHD, and, also from young adults on the lifelong journey of Childhood Heart Disease. The final session of the day, a panel discussion about ‘what is required to facilitate seamless and effective transition from paediatric to adult health care services’, was introduced by the Hon. Jack Snelling MP, Minister for Health and Ageing (SA).

A number of the presentations on the day, including those by Assoc/Prof Yves d’Udekem (pictured left) and Dr Jim Ramsay were about projects that have been supported by funding through the HeartKids Research Program.

The call for applications for the HeartKids’ Grants-in-Aid Program for funding in 2014 has now closed. Enquiries have doubled since last year’s program. You can find more about our research programs on our website http://www.heartkids.org.au/ Recently I attended the Heartkids NSW “Tiny Tickers Ball” together with our National Sponsorship Manager, Fiona Glenn, and a number of our national sponsors. As well as having a very enjoyable evening, it was a good opportunity for our sponsors to learn ids family. Congratulations to Dave HeartK more about the organising committee on a great working hard the Rose and event! Kind regards, Jann Jann Kingston CEO, HeartKids Australia

HeartKids and IKEA n welcomed to the HeartKids is delighted to have bee rity partner! cha l IKEA family as their new nationa is wiped, IKEA Now, every time an IKEA Family card t between HeartKids makes a 10c donation which is spli partner). and UNICEF (IKEA’s global charity free and entitles you Membership of the IKEA Family is r great benefits. othe and es invit to exclusive discounts, Sign up here: /family/benefits.html http://www.ikea.com/ms/en_AU in your profile to and then go to the ‘charities’ tab n from your swipes choose to have 100% of the donatio to go to HeartKids.

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herine Photo courtesy of Captured by Kat .au/ com www.capturedbykatherine.


Reflections Heart Angel In loving memory of Summer Lucy Alvina Senior Born Stillborn 18th July 2013 Little Sister of Stephanie Helen Sophie Senior Parents Lachlan & Rebecca

Little Snowdrop

’t bloom, tice if a Snowdrop doesn The world may never no soon. er if the petals fall too Or even pause to wond be, forms, or ever comes to But every life that ever ty. rni ete all me small way for Touches the world in so d gone. d for was swiftly here an The little one we longe t still shines on. n planted is a light tha But the love that was the what to do. empty, our hearts know are s arm r ou h ug tho And e you. r hearts says that we lov For every beating of ou ~ Author Unknown ~

Heart Angel In loving memory of Blake Gordon-Cooke 4.02.12 - 13.09.13

BLAKE

Blake loved to laugh Blake loved to learn Blake loved to play Blake loved to give sloppy kisses Blake loved to blow kisses Blake loved to cuddle Blake loved to wave at the hospital Blake loved to watch the blue mop phone Blake loved to talk to daddy on the my Blake loved to sing with mum ked in his own way) Blake loved to dance to music (roc e Blake loved to pat the goats at hom Blake loved to ride in the car ic Blake loved to sing along to mus ple peo Blake loved to engage Blake loved Mummy and Daddy Blake loved to SMILE ........

Blake loved .............................

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 Peter Elder 13th September 2001 Thomas Goodfellow 24th September 1999 Bryce Ibbs 7th October 1989 Rohan Seward 7th October 1994 Kiara Ward 8th October 2005 Jesse Cotter 12th October 1990 Matthew Moran 20th October 2004 Simon Holmes 28th October 1994 Jacob Holden 5th November 2001 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 Phoebe Rolando 12th September 2012 Eliza Davis 13th September 2010 Peter Elder 14th September 2001 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 Thomasina Brasier 12th October 2012 James Kelleher 22nd October 2008 Kiera Ziegenhardt 29th October 2010 Simon Holmes 8th November 2012 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.

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Branch News

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

Branch Co-ordinator updates: HeartKids would like to take this opportunity to thank Naomi Keath for being our Ballarat Branch Coordinator in recent years. We are delighted to be introducing two new Coordinators, Rohi Dobell from Ballarat, and also Cassie Clark from Bayside.

Cassie Clark

Rohi & Alan

My name is Cassie Clark and my partner’s name is Lindon Ward, and we are the proud parents of a heart warrior.

Our courageous and beautiful heart child, Alira Clare Dobell, was born on 9th June 2012.

Our journey begins when our son Logan was 1 day old. He was diagnosed with a moderate VSD and Pulmonary Stenosis. After having three healthy babies previously, having one who was gravely ill was not something we knew how to deal with.

After several ultrasounds, the obstetrician confirmed that there was something wrong with our baby’s heart, called Tetralogy of Fallot, and that she needed to be delivered at The Royal Women’s Hospital.

Over the next 6 months Logan had check-ups at MonashHeart clinic with Lauren Shearer and Bennett Sheridan, and we were looked after by Sherrie McDonald from HeartKids. It’s amazing how much weight was lifted just having someone to talk to who knew what we were going through, not to mention that Logan liked to flirt with Sherrie every time he saw her. A lot of people have asked us questions like: how can we be so strong? how do you cope with something like that? All I tell them is you’ll be amazed at how quickly you find the strength needed when one of your children’s life is in danger. Also it helps when you have a good support network of family and friends. Logan was on the waiting list for his surgery, but one morning in February I couldn’t rouse him. He was lethargic all day and had a blue tinge around his lips. I called his cardiologist Lauren and she advised to bring him straight to emergency at Monash. After an echo was performed, Logan was transferred to The Royal Children’s Hospital and his surgery was scheduled for the next day. It turned out the latest echo found he had acquired a double heart chamber due to RVOTO (right ventricular outflow tract obstruction) which meant that the blood flow to his lungs was restricted.

At 36 weeks and 3 days, Alira was born by Emergency C-section due to complications, weighing 2.58kg. After birth she was taken to the Special Care Nursery where she stayed for her first week of life to be closely monitored and she was fed through a nasogastric tube. After the first week she was declared safe to travel via NETS (Newborn Emergency Transport Service) to the Special Care Nursery at Ballarat Base Hospital. She was to stay there until she reached 40 weeks or to term, and also had to reach a certain weight before being discharged. When Alira was three weeks old, her condition gradually became worse with feeding and breathing difficulties. She was taken to The Royal Children’s Hospital where they diagnosed her with Laryngomalacia (or floppy larynx). For the first 4 months of her life, she didn’t grow or put on any weight which was a concern for all involved in Alira’s care. As Alira’s Laryngomalacia was affecting her health, she had a series of operations – firstly, a throat operation to cut away floppy tissue at the back of her throat, a heart operation and then a second throat operation due to more breathing difficulties. It was decided by the Respiratory team that Alira required oxygen and she was placed on to CPAP during her day and night time sleeps.

The hardest part of our journey was seeing our beautiful boy smiling at us while being wheeled away to surgery. The fear of the unknown and sense of helplessness was overwhelming whilst waiting for the surgeon’s call.

Alira is currently home, still on oxygen, CPAP, SATS monitor and is machine fed into her PEG. Having her home has been fantastic and we are able to have time at home as a family. We are currently travelling to and from The Royal Children’s Hospital every three weeks for appointments. Due to being in hospital for almost eleven months of her first year of life, she is slow with development.

Logan’s surgery was performed by an amazing surgeon by the name of Johann Brink, and the way we look at it, he not only fixed our son’s heart but our’s too. He closed his VSD and resected most of the muscle bundles. Six hours after he went in my mobile rang; it was the surgeon. I was almost too scared to answer it. When I heard the magical words ‘the operation was a success’ that was when I finally felt free to break down. I cannot describe that feeling adequately; the best way I can explain it is to say that it was like every muscle in my body could finally relax.

We have made many amazing friends and met some beautiful parents though HeartKids morning teas. HeartKids is such an amazing organization - one to turn to when it feels like your whole world is falling apart. The HeartKids’ ladies are truly amazing and we are forever grateful to them. RCH has well and truly become our second home in the last year or so. It’s an incredible hospital with such amazing and friendly staff in so many areas of care and support. Without this hospital our beautiful, happy and courageous daughter wouldn’t be here today.

Now we have a cheeky 10 month old who is exceeding expectations in his development, already has 12 teeth, also cannot sit still for more than a minute and we wouldn’t have it any other way.

Alan and I are thrilled to be given the opportunity to be the Ballarat Branch Coordinators for HeartKids. We are looking forward to meeting and supporting other HeartKids families here in Ballarat.

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Note: To read a longer version of Alira’s Story, you can go to the HeartKids Victoria website: www.heartkidsvictas.org.au/stories/


Tasmania News Tassie Coming Events Tassie Muscle & Classic Car Cruise

The Annual Police Charity Trust Bike Ride

Date: 24th November, Meeting at 10.30am Departing at 11.30am from The Silverdome Cruising To: Longford Village Green

Date: 22nd-24th November 2013 HeartKids has been nominated as a joint beneficiary.

Special Children’s Christmas Party

Tasmania HeartKids Car & Bike Show

Date: 24th November Venue: The Derwent Entertainment Centre, Hobart RSVP: 25th October to Kylie Smith kylie.smith@heartkids.org.au

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

Latrobe Awareness On Sunday 6th October the Devonport HeartKids group held a Sausage Sizzle Fundraiser and Awareness Day at the Latrobe ‘Bumps, Babies & Beyond’ Market. We were very lucky with the weather and the day was a great success. It was fabulous that we could work together to raise some funds and awareness in our local community, but even better to meet some more heart child families from our region. Thanks to all for your help and support, and to these families who were able to come. As well as selling sausages, we had a small array of cakes and treats, and raised $585.95. The children also had a wonderful time selling lemons that they had picked the day before, and made $6.85! They loved it! We look forward to holding more fundraising and social events in the coming months.

Christmas Cards

Christmas is fast approaching and now is the time to start thinking about buying presents and organising your Christmas card list. If you’re looking for unique and personalised cards to send that not only look great but support HeartKids, then look no further than www.christmascards4charity.com.au/hkvic 40c from every card purchased will be donated to HeartKids Victoria to help us continue our work supporting children and families affected by childhood heart disease. This year please give a card that keeps on giving.

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Awareness, Celebrations ... Epic Photography Photo Shoot

We’d like to give a big thank you to Epic Photography for donating their time and their South Yarra studios so that HeartKids could generate some new marketing photos. My family and I were lucky enough to be asked to participate in the shoot in July, which gave us some amazing memories, as well as some lovely family photos which we’ll laugh at for years to come. The friendly staff at Epic Photography really put us at ease while we laughed and joked around in front of the camera. Their skill and expertise truly captured some special moments which I hope will help HeartKids to put other families at ease during what may be a difficult time. One of my favourite parts was talking about my experiences with Complete Heart Block with Mum on video. During this, we shared our stories with the friendly staff so that families new to HeartKids can gain a new perspective on heart conditions. Again, HeartKids would like to extend a huge thank you to the generous team at Epic Photography, for the generosity, skill and pizazz which they brought to the shoot. Written by Flynne Tytherleigh

Celebrating Milestones In August heart child Kane Holmes reached a major milestone, his 1st birthday! Kane spent his first six months of life in Hospital (Ballarat, Monash, mostly RCH rosella, koala and butterfly wards). Kane’s 1st birthday party was also a HeartKids fundraiser in his home town of Stawell.

Well done to Abby, the Yarra 13 2s netball official mascot and coat carrier! Abby supports her sister Jasmyn’s team every Thursday night and at tournaments. Due to Abby’s heart condition she is unable to play any sport. It is fantastic to see how the team and club have embraced this. Abby, you are doing a fantastic job!

Little Kid, Big Operation Thoughts of a grandfather, Nurul Islam Bsc [Bangladesh] To Ahyan You are a blessing of God. Your father and mother have big expectations for you, similar to your grand parents. Your smiling face gives some light to our heart and we dream of your future. You will live in the future. You have every right to live and your parents and grand parents must give you that chance to live on. You are a great pearl to your grand Pa and grand Ma. Everything falls into darkness without you. When you were born, we suspected some problems with your health. You had breathing problems and we were

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not sure what it was. Your father and mother took you to Bangkok hospital where they discovered that you had a hole in your heart and your heart had only one valve. We decided to take you to The Royal Children’s Hospital in Melbourne as this was the right place where such complex operations could be done. The great surgeon Yves d’Udekem operated on you on 28th May 2013. You have recovered now and you are great. You are exceptional and you are special. We are praying for your long life, with a hope that you will invent something to keep peace and harmony in the world.

Sophie Nester (from Bendigo HeartKids) has turned 18 and recently made her Debut.


... and Fabulous Events Fashion Aid

Fashion Aid 2013 was a night of glitz and glamour. A night filled with glamorous women displaying the elegant, classy, luxurious and sometimes daring dresses whilst the men were resplendent wearing the finest of suits. People from all walks of life came together to merge fashion and entertainment with a great cause, to raise money for HeartKids. The moment every guest walked into the Palladium at Crown Casino they knew they were in for a memorable night. Every table was decorated with beautiful, simple and elegant centerpieces. The room sparkled with an array of dark purple and blue lighting giving the room a somewhat mystical feeling and the food and wine that was being served was simply mouthwatering. The event was hosted by Em Rusciano, designers Arthur Galan AG, Alex Fevola’s new label Craythelabel, Alin Le Kal, Gorge Design, SARAFOX, Lingerie Boutique, Matcho Suba, Belluccio and Active Runway graced the catwalk. Miss Murphy from The Voice opened the event and Leo Sayer had everyone on the dance floor. Bea Tomlin spoke on the night sharing her family’s story and the work of HeartKids. The HeartKids team was very proud to have been part of such a great event. It was truly heartwarming to see how much people were willing to donate and support our cause by buying raffle tickets, making a pledge or placing a bid on a fantastic array of items in the auctions. The fashion, the entertainment and foremost the people made Fashion Aid 2013 a truly memorable night. Our very special thanks Rombotis for inviting HeartKids to participate as the charity Johnny and Emma must go out to of choice for 2013. They work tirelessly to make Fashion Aid the success it is and we were delighted to be the beneficiaries this year. HeartKids would like to thank the generous team at Fashion Aid for all their hard work and dedication to making this donation possible.

Hearts, Hats and Hooves

On the 15th August HeartKids held our inaugural ‘Hearts, Hats and Hooves’ Cocktail Party to help raise funds and bring awareness for children affected by childhood heart disease. Looking for a unique and fun night out, the theme of Spring Carnival was created. Held at Atlantic in Docklands the beautiful Maia room was transfo rmed into a Spring Carnival Sensation. On a catwalk with the latest fashion collection from Seven Souls, milliner Danica Erard showcased her gorgeous hats and previewed what’s on trend for this season. We received great support from the racing industry. The event was hosted by race caller Adam Cretten den and featured race calls of past Spring Carnival races by Adam Olszanski won by jockeys Luke Nolen, Damien Oliver, Brent Stanley and Nathan Stanley. The winning jockeys were all present and shared their experiences while being interviewed by Adam Olszanski. Guests, dressed in elegant racing attire of suits, dresses and stunning fascinators, purchased raffle tickets and silent auction items while enjoying the live entertainment, delicious food and wine. The kind generosity of people who made this event possible, from items and services donated, to simply attending and embracing the night made this event a truly successful and memorable one to all those involved.

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Heartfelt Thanks.... In Memory of Tina The Gilgandra Community rallied together on Saturday July 27 to show just how generous they can be. Bathed in sunshine over $10,000 was raised for HeartKids in a day of crazy outfits, quality rugby league and tremendous generosity displayed at McGrane Oval. The event was held in loving memory of Tina Nelson, the wife of former Gilgandra resident Matt Nelson. Tina died of a rare heart condition known as Hypertrophic Cardiomyopathy, a condition that has been passed onto Matt and Tina’s children Hamish and Claude. Despite this heart-wrenching story, HeartKids Day was about having fun. The event kicked off at 9.30am, where a mixed netball competition entertained the crowd. Netballers old and new put on the bibs and in some cases, the A minutes silence held before the Under 17’s match between tutus for a fun morning of netball. This wasn’t the average game Gilgandra and Gulgong, in loving memory of Tina Nelson of netball. It was the only time umpires could accept cash bribes to change the flow of a game and dramatically influence the score. For once, the only score that mattered was how much money could be raised for HeartKids. The team named Mystery Bags eventually won the grand final, yet it could be argued that the result was decided by who had the most money to donate. Once the netball was completed many male netballers could take off their tutus and focus on a day of rugby league. A minute’s silence was held in honour of Tina Nelson, before the Under 17’s match between Gilgandra and Gulgong. Matt Nelson said it was a very powerful moment and Tina would be very proud. “I was very happy with the turn-out and amazed at what Jaimee McEwen has done for us,” Mr Nelson said.

Matt Nelson pictured bottom left with his team of netballers

Cycle de Heart

Jaimee McEwen started planning for the day way back in June and worked tirelessly to organise the day. “It’s been so easy to organise because anything I needed was donated to me by the community,” Mrs McEwen said. Thanks to Paul Bidmeade for permission to use this article which was written for the Gilgandra Weekly

On Thursday 15th August Brett Hopson began his endeavour to cycle from Echuca to Melbourne via Bendigo, Ballarat and Geelong. After departing from Echuca East Primary School through a pyjama-clad guard of honour at 9:30am, Brett rode into Red Rooster in Bendigo early that afternoon. The next day he left Bendigo at 7am heading for Ballarat, riding through the challenging hills of Mount Franklin and Daylesford with a 60km tail wind for most of the day! On the Saturday Brett rode from Ballarat to the carousel on Geelong’s Waterfront, and although Mt Buninyong posed a challenge, the ride was much easier and almost wind free. After arriving in Geelong, Brett and his girls enjoyed a carousel ride with the Gibson family. Sunday was the final day as Brett rode from Geelong to The Royal Children’s Hospital, Melbourne, where he was met by family and HeartKids representative Bea. Brett’s wife Kylie and five daughters, as well as his Mum and Dad, were his support crew, following along in the car behind and they were a great support with many cheers along the way. This year Brett has raised awareness and over $3000 for HeartKids! Brett is taking expressions of interest for Cycle de Heart 2014 and will have details of the different route soon. He can be contacted on: bhopsonyourcelebrant@live.com.au

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Centro Karingal

When Centro Karingal went looking for a local community charity to partner themselves with, they didn’t have to go far. Marketing Manager, Allison Bailey’s daughter Madison was born with a congenital heart condition, so HeartKids Victoria was the obvious choice! Now 12 years old, Madison is coping well, but it’s not always an easy path. “Having seen and experienced firsthand the stress and agony heart children and their families endure, there was never an alternative choice for the centre,” said Allison. “We have worked hard to increase awareness and improve the lives of heart children in Victoria over the years and trust that we have made a difference along the way.” Centro Karingal believes that incorporating a children’s charity into their school holiday program actively promotes future contribution, inspiring all generations to work towards improving our community. Last School Holidays over $3500 was raised for HeartKids Victoria by building teddy bears!


....for Your Efforts! Deer Park Football Club Deer Park Football Club ran a Sportsman’s Lunch at Crown Casino on the 15th August and chose HeartKids as their charity of choice. The event was held in the River Room at the Crown complex and featured a beautiful three course meal followed by a panel discussion. The panel featured media personalities Caroline Wilson, Craig Hutchison and Grant Thomas and was both informative and entertaining with a range of topics being covered and a lengthy question and answer session being held. After the panel Craig Hutchison auctioned some sports memorabilia which raised $3,400 for HeartKids. Our thanks must go to Bernard Lee and Scott Thompson for arranging the event and inviting HeartKids to participate.

Run Melbourne The morning of 21st July was sunny but very cold. It was perfect weather for the thousands of runners taking part in Run Melbourne. While I wasn’t running in this event I still enjoyed the atmosphere of the day, volunteering with HeartKids as a course marshal. It was a very early start but there was a hype in the city and it was exciting to be part of the day where everyone was happy and full of life. My post was not too far from the start line and a few runners took advantage of using a blocked off side street for warming up. To my surprise Cathy Freeman, a hero in my eyes, came running toward me early in the day. I was so excited. When she came up for a second time I had to meet her and have a photo. She was busy training but gladly stopped and smiled for a photo, a great memory for me to take away. Matt Heafield

Timber Merchants Association

HeartKids was the charity of choice at the Timber Merchants Association Annual Charity Dinner held on April 23 2013 at Crown Casino. It was a wonderful event of entertainment and speeches that spanned a number of interests. Our Support Manager, Tracy Stanley, shared the work of the HeartKids Support team with the guests, Detective Senior Sergeant Ron Iddles reviewed interesting crime cases and ventriloquist Darren Carr entertained guests. The event raised $9,780 for HeartKids.

Christmas in July On 20th July, 175 people attended our Christmas in July event to help raise funds and celebrate our heart children. The venue was Pitruzzello Estate at Sunbury and their amazing Chandelier ballroom was decorated with Christmas trimmings and HeartKids balloons. Guests enjoyed a lovely three-course Christmas Dinner complete with bon-bons, jokes and everyone in a jolly Christmas spirit. A raffle was held and Santa came with gifts for every child. his One of the heart children who attended believed that the event was was he as him for was event the t though he that ed explain party. His mum d awarde was having heart surgery on the Monday after. The same little boy , present e everyon a door prize and with a big brave voice, he said to a “Thank you for coming to my party” and then ran off the stage! It was very special occasion for him. The room was brought to tears when two of the guests, Maddy Florescu and Sophie Nester, invited people to listen to their inspirational journeys of growing up as a heart child. Thank you to everyone who attended, and to Emma Dwyer and Amy Emmett who organised a great evening.

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Thank you for your recent gifts...

ABD Group Ace Cup Cakes Adamo, Leo Ali, James Ancer, Erwin Anderson, Neil & Annette Angelovsk, Sonia ANZ Trustees Foundation Aussie Farmers Direct Australian Communities Foundation Azzapardi, Michelle Rowe, B and H Badger Creek Cakes & Cookies Baker, Andrew Barbary, Kathryn Barton, Pam Bayford, Hugh Bayside City Council Social Club Benfield, Fiona Bentley, Warren Berry, Jeannette Beyond Medical Education Bibby Financial Services Australia Pty Ltd Biggin & Scott Blackman, Jill Bolton, Danielle Brittain, Trish Brown, Kylie CAF Australia Caillaux, Rolando & Natalie Cameron, Cheryl Canny Carter, Kelly Cashman, Emma Cater-Maggs, Shae Cavka, Johanna Chaplin, Patty Charter, Louise Clark, Kristine Clifford, Jennifer Cloud 9 Thoroughbreds Coady, Jay Collins, Anne & Dennis Colonial First State Global Asset Management Compston, Julie-Anne Considine, Susan Cool, Alistair Cooper, Brooke Cooper, Christie Copeland, Bethany

Coulston, Lynette Crowe, Josephine Curran, Annalise Curran, Neisha Day, Irene Deer Park Football Club DEEWR DeLorenzo, John Department of Health & Ageing Dexheier, Nicola Dingley International Hotel Disauro, Sherene Dobell, Rohi & Alan Domos Design Draper, Marjorie Drew, Tammy Dunkley, Christopher Dwyer’s Painting and Maintenance P/L Dyson, Ashlee Eastbourne Primary School Edwards, Peter Edwards, Steph Eildon Bakery Elgin Lane Studio Elliott, Claire Epic Photography Epskamp, Ada Ermel, Sharon Estate of Margaret Anita Beruldsen Evans, Sandra Ever After Cake Company Fahy, Patrick Fallace, Michael Farley, Damian FashionAid Featherston, Kevin & Beryl Fennell, Emma Fennell, Hannah Fitzpatrick, Sharni Fiumara, Rosie Florescu, Maddy FoodWorks Alexandra Fresh Marketing Corporation G N Design Garcia, Adrienne Gaunson, Mattew Geelong HeartKids Gelley, Tammy Giblin, Lisa Gibson, Brittany

Gilgandra Rugby League & Netball Club Girton Grammar School Ltd Gonzalez, David, Zoe & William Gorgievksi, Evdoxia Green, Tara Grill’d Grimbos, Anita Gruber, Maria Haenen, Toby HAG IMPORTS CORPN. (AUSTRALIA) PTY LTD Hall, Matthew Harbour, Brooke Hassan, Zerin Heather, Sarah Henderson, Emily Henry, Jan Herbertson, Raelene Herdman, Jessica Hermans, Val Hickey, Laura Hill, Anne & Noel Hill, Margie Hodson, Clint Hoffmann, Julie Holmes, Russell Hopkins, Terry Hopson, Brett Hoskins, Kristie Howell, Stephen Hua, Phong Hyland, Kelly Iced Moments Jack, Livinia Jackson, Danielle James, Claudine Johnson, Paul Johnston, Daniel Johnstone, Tanya Joison, Michelle Karagiorgos, Kon Kearney, Sarah Keppell, Hudson Kidd, Colin Kiwanis Club of Brighton (Vic) Inc. Kiwanis Club of Cobram/ Barooga Inc Kiwanis Club of EchucaMoama Inc Koletis, Vasso Koliantzas, George Kontogeorgis, Sonia Kumari, Jyotika Lammardo, Lleyton

Lane, Jessica Lane, Julie Larcombe, Kay Lawson, Samantha LeasePlan Leggett, Adam Lewis, Christine Lloyd, Archer Loch, David Lord Mayor’s Charitable Fund Loyala, Stephanie Mackay, Nicole Madden, Hayley Madden, Maree & Peter Manabe, Mario Martain, Robin Mastek, Aneta Mates, Cameron Mawdsley, Aleida Mays, Helen McCrone, Nikki McDonald, Sherrie McGiffin, Kylie McGriffin, Shuan McIntosh, Ian McLennan Kiwanis Club McMeel, Kay McNamara, Hayley Megens, Scott Melbourne Shrine Club Melkic, Mahmut Mercer, Katrina Lucci, Meri Merivale, Anthony Middlemiss, Adam MillieMae Miramini, Saeed Mirenda, Phillip Mitrovski, Zoran Moretto, Sarah Morland, Kirsten Mulgrew, Claire Multi Direct Murphy, Carmel Murphy, Jed NAC Nelson, Matt Nicol, Joan Niedermeyer, Daniel Nodin, P and C Nolan, Mr Michael O’Connor, Louise Ogilvie, Sandra O’Keefe, Hannah Online Lead Management

Orr, Jason Palmer, Brad Paszkiewicz, Daniela Paszkiewicz, Krystyna Paton, Iain Shekleton, Paul Peers, Miss M Pham, Thi Ponsonby, John Popovski, Vicoola Porter, Mrs Gwen & Mr Athol Prest, Elaine Price, Matthew Pritchard, David Project Dovetail Pugh, W Quinane, Bianca Radic, Tamara Ray, Paul Richardson, Kelly Ridgway, Evie Rielly, Yvette Ritchies Stores Robertson, Kerrie Roemisch, Courtney Rosewall, Leanne Rowe, Jenny Royal Agricultural Society of Victoria Royal Automobile Club of Victoria (RACV) Ltd Sacdpraseuth, Rata Santuccione, Wendy Santuccione-Madden, Michelle Saunders, Tania Scalora, Carmelina Scolaro, Eva Senior, Kendall Shamrock Hotel Sharpe, Gabrielle Shearer, Laurence Signed and Framed Skinner, Rhea Smith, Caroline Solid Foundation Concreting Spall, Irene Sproull, Judith Sprules, Belinda St Michael’s Grammar School Stanton, Georgie Stavropoulos, Chris Stevanovski, Diana Stewart, Kate

Storey, Sue Sullivan, Linda Sweetest Obsession Szabo, Szilvia Tahn, Huss Talbot, Perry Tang, Peter & Joyce Taylor, Noella Telstra Templar, Jodi Terrill, Mark The Art Cabriolet The Cake Angels The Lingerie Boutique The New Cocoon The Strathfieldsaye Storm Basketball Team Thomas, Ben Thomas, Emily Thomas, Fr. Donald Tighe, Lindsay Timber Merchants Association Tiny Tiny Shop Shop Tobin, Kathleen Trailers Only Travis, Duncan Trewhella, Louise Trybooking Tyrrell, Mark Veness, Craig Walker, Katie Walsh-Buckley, Warwick Want, Merle Weeding, Danielle White, Claire Whitehorse Holy Royal Arch Chapter No 124 Wilkinson, Sam Wilson, Lindsay Wipro Yoon, May Z Transport Group Zhu, Shu Zuchowska, Martyna Zyznowska, Marta Memorial Donations for: • Anthony Joseph • Ben Murphy • Blake Gordon-Cooke • Enid Banelis • Jacob Holden • Michael Tom Conci • Paige Berry • Pru Kellam • Tina Nelson

Circus Quirkus

We have been lucky to receive tickets to this show for a number of years running and this year the families were entertained again when they attended the show in August.

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We thank the Rotary Club of Preston and the many local businesses who enabled our HeartKids families to receive free tickets to the show.


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.heartkidsvictas.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

National:

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

State:

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 

Diary Dates

  

neral Meeting artKids Annual Ge  Thurs 24 Oct - He Camp  n ee Tw r be to Oc Weekend 25-27  HeartKids ber - Skydive for to Oc 26  Saturday y Da rm Fa r - Myuna  Sunday 27 Octobe  r - FunFlight be m ve No 10 ay Sund Car & Bike Show  v - Broadmeadows No 17 n Su  ea run mber - The City2S Sunday 17 Nove sic Car Cruise   Sun 24 Nov - Tassie Muscle & Clas Xmas Party e Special Children’s  Sun 24 Nov - Tassi rty Pa  as tm ris Ch igo nd Sunday 1 Dec - Be  as Party elbourne Christm M c De 1  Sunday ic ag M of l va sti r - World Fe  Sat 21 Decembe th  s Awareness Mon id tK ar He ry ua Febr ia Car & Bike Show  February - Tasman 2 ay nd Su  s’ Gala - ‘Old World Circu Friday 7 February  or go

eck inside these events ch For more about .au rg s.o ta vic to www.heartkids 

MELBOURNE METRO BRANCHES Bayside Cassie Clarke 0499 741 116 cassielouisehk@gmail.com East Bentleigh Maggie Stavrou (03) 9563 7133 maggiestavrou@live.com.au Bundoora Amy Heafield 0421 518 366 amy.heafield@heartkids.org.au Dandenong Lucy (Fatima) Hussain 0430 738 820 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 0407 551 967 (02) 6056 6448 april_peter@internode.on.net Bairnsdale Caroline Foard 0438 928 821 cfoardy@yahoo.com Ballarat Rohini Dobell 0407 851 648 rohisew@hotmail.com

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

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

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

www.heartkidsvictas.org.au

 

Contact Details Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 goliathgroup@bigpond.com

Wangaratta Lisa Dekeling 0421 655 636 & Shane Hack 0488 221 184 lisadekeling@optusnet.com.au

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

OVER 18’s Erin Cervelli (03) 9513 9030 Cobram hearts4heart - Support for Adults with Bianca Quinane 0419 674 408 Heart Disease biancz1979@hotmail.com Hall 0426 240 636 Tanya Echuca/Moama TASMANIA arts4heart.net.au info@he Tracey Hard 0438 962 056 Burnie t.au heart.ne hearts4 tracnsteve@bigpond.com Amanda Riley 0448 330 611 KAWASAKI DISEASE Geelong amanda.riley1@bigpond.com Shirley Mates (03) 9894 1257 Libby Gibson (03) 5250 2439 Gail McFarlane (03) 6431 2127 info@kdfoundation.org.au 0411 057 905 0488 033 789 Website: www.kdfoundation.org.au libway2000@yahoo.com themcfarlane4@bigpond.com KABUKI SYNDROME Horsham Devonport Stacey McKiernan Gaynor Baker (03) 5384 2280 Claire Gluyas 0408 351 661 (03) 5275 1542 com igpond. mtbcarpentry@b richardsclaire@yahoo.co.uk stacey@sakks.org Kyneton Website: www.sakks.org Hobart Lauren Roberts (03) 5427 2696 Paul Hyland (03) 6247 8435 HYPOPLASTIC LEFT HEART laurie102@hotmail.com 0418 561 504 SYNDROME Latrobe Valley paul.hyland1@bigpond.com & SIMILAR CONDITIONS Sophie Werner 0427 955 453 www.hearts-of-hope.org Launceston sophia.werner@bigpond.com Leanne Amarant (Victoria) Kylie Smith (03) 6393 6240 Mildura (03) 5358 2945 0448 983 587 Fiona Dowie 0438 396 790 Leanneamarant@hotmail.com kylie.smith@heartkids.org.au ryan.dowie@bigpond.com Csaba Ovari (Tasmania) (03) 6229 8169 INTERSTATE Portland csaba.ovari@hearts-of-hope.org Contact details at: Kerry Sluggett (03) 5523 2503 www.heartkids.org.au 0418 312 320 LONG QT SYNDROME (LQTS) ksluggett@iinet.net.au Sherrie McDonald 0431 544 510 SPECIAL INTEREST GROUPS sherrie.mcdonald@heartkids.org.au Shepparton www.sads.org.au or BEREAVED FAMILIES EMAIL Cheryl Alexander www.sads.org.uk/ SUPPORT (03) 5825 4005 http://www.hearts-of-hope.org/ CARDIOMYOPATHY ASSN of AUST. chezalex70@bigpond.com support/bereavment/intro.htm Website: www.cmaa.org.au/ South Gippsland HEART TRANSPLANTS Kerrie Disney (03) 5182 5531 MUSLIM FAMILIES Belinda Holden 0400 714 182 0409 950 608 Lucy (Fatima) Hussain urme2@tpg.com.au 0430 738 820 PACEMAKERS Mandy Tichelaar (03) 9728-6984 MULTIPLE BIRTHS Stawell Leanne Amarant April Schubert (02) 6056 6448 22q11 (03) 5358 2945 or 0419 864 412 Audrey Cater (03) 9394 7965 0407 551 967 leanneamarant@hotmail.com april_peter@internode.on.net 0420 500 905 audrey.cater@bigpond.com Wonthaggi Cath Methven 0429 325 643 catmet73@gmail.com

2013 spring heartkids victoria tasmania magazine  

Magazine for families and friends of HeartKids Victoria-Tasmania

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