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VICTORIA Summer 2012-2013

Quarterly Magazine for Victoria and Tasmania

Volume 22 Issue 4

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Howie’s Place Website C  hristmas Celebrations N  ew RCH Turns One

support

awareness

research

advocacy


Matters of the Heart Chief Executive Officer Happy New Year from all of us at HeartKids, we hope you all have a very happy and healthy 2013. In this edition of the magazine we feature a number of activities that were run through the back half of 2012 as well as inform you of many up-coming events and initiatives. One of the major achievements you will see featured is the handover of the Howie’s Place website to The Royal Children’s Hospital. This was a significant milestone for HeartKids Victoria as it is an activity that was started some time ago by Dr Dan Penny of the RCH who sought support from HeartKids, then led by Alison Byrne. It has been successfully passed through generations of staff and Board members to culminate in the high quality product that was handed over in December 2012 and is now available as an integrated part of the RCH website. The aim of Howie’s Place is to help all children suffering from heart disease and their families understand what to expect, and assist them in preparing for, visits to the hospital. It is an initiative and outcome that we are extremely proud of and I must personally thank Dr Michael Cheung, eegenda and the Honda Foundation for their wonderful support in helping bring this major project to fruition. We continue to introduce new ways of providing support to heart children and in October launched our first “Tween Camp” for kids aged between ten and thirteen. The camp aims to provide a bridging camp between our Candlebark Farm family camp and the national Teen camp. Our young Ambassador, Erin Cervelli did a wonderful job in working with Tracy to arrange and then supervise the Camp. The success of the camp has encouraged us to commit to making this an annual event. So all you “Tweeners” be sure to put your name down for the next camp later this year when the date is confirmed. We also had our AGM in late October and three new Board members were elected, welcome to Melissa Karatjas, Tania Tytherleigh and Ashley Koenig. Unfortunately, our Chairperson, Gary Karatjas had to resign his position for personal reasons not long after the election. In accordance with the Constitution, the Board elected Phil Riggio to fill that role and asked the next highest vote getter from the election, Wayne Crofts to join the Board. Our heartfelt thanks go to Gary for his fantastic contribution in leading the Board for just over two years. There is no doubt that HeartKids took many steps forward under his stewardship. We have many exciting events coming up and I encourage everyone who reads this magazine to please get involved. We need your support either through attending our events and fundraisers, volunteering to help out, or through running your own fundraising events to support us. Every contribution is greatly valued. In closing, I would really like to thank everybody who has been involved in making 2012 a great year for HeartKids. On behalf of all the HeartKids team, we look forward to meeting and working with many more of you in 2013. All the best.

Terry Hopkins CEO HeartKids Victoria

of new website Howie’s Place, Front cover: Rachael Coopes, host ren. introduces Howie to some heart child ren’s Hospital ERC. Child l Roya The of Cover photo courtesy information for this edition. Thanks to all who sent photos and - send to: ome welc ys alwa are Contributions heartkids@heartkids.org.au 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

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

HeartKids Victoria Employees * Chief Executive Officer Terry Hopkins 0478 085 480 terry.hopkins@heartkids.org.au * Support Manager Tracy Stanley 0478 091 773 tracy.stanley@heartkids.org.au * Family Support Coordinators Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids.org.au Amy Heafield 0421 518 366 amy.heafield@heartkids.org.au * Support Events Coordinator Lynette McCoullough lynette.mccoullough@heartkids.org.au * Office Manager Sarah Currie 0414 942 303 sarah.currie@heartkids.org.au * Administration Assistant Amy Emmett amy.emmett@heartkids.org.au * Membership/Magazine Coordinator Margaret Patullo margaret.patullo@heartkids.org.au * Magazine heartkids@heartkids.org.au

this magazine is of the personal stories in Permission to reprint any er articles may be oth Any . rson irpe Cha or the required from the author oria. Vict ds rtKi Hea to nt ledgeme reprinted with an acknow do not imply ine gaz published in this ma . Please note that articles s of HeartKids Victoria view rall ove ect refl not endorsement and may nt d stories represe nions expressed in chil cific to each Also note that the opi medical details are spe t tha and s nce erie r child’s, you personal exp to ilar sim ditions may appear tion case. Although the con ng more specific informa uiri req s ent Par er. diff other details may . gist iolo card d’s chil ir should check with the

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


Major Achievements Hoffy - Local Heroine

Howie’s Place

Demystifying hospital for kids with cardiac conditions

Our amazing supporter Julie “Hoffy” Hoffmann rubbed shoulders with Australia’s sporting elite at the Australian Women’s Health ‘I Support Women In Sport’ awards in December. Hoffy took home the “Local Heroine” award for her wonderful support of HeartKids. The event was attended by sporting greats Anna Meares, Dawn Fraser, Sally Pearson, Leisel Jones, Giaan Rooney, Lauren Jackson and Stephanie Rice. We’re so proud of you Hoffy and thank you for your ongoing support.

On Friday, the 7th December, The Royal Children’s Hospital (RCH), HeartKids and The Honda Foundation came together to launch an interactive website aimed at shedding light on the hospital experience and dispelling anxiety for thousands of Australian children living with a heart condition. The website, named Howie’s Place, is the first of its kind Julie Hoffman, pictured in Australia and features colourful child-friendly videos right, holding her award. for children and families to ensure they are prepared and Photo courtesy of informed before they enter the hospital environment. Women's Health In 2006 Dr Dan Penny, then Director of Cardiology, had a magazine vision to create a vehicle that would demystify for those children diagnosed with heart conditions and their families, both the condition itself and the impending interactions with the hospital. With the assistance of Alison Byrne, interactive tool that was then State Manager of HeartKids, they approached The engaging and could adequately . funding for Honda Foundation educate and prepare both the ids, Through a partnership between the RCH and HeartK patient and their family before tion, and generous funding from The Honda Founda they go to hospital. the to se Howie’s Place was developed in respon “With generous long-term anxiety families can feel before they enter the was tool tive funding from The Honda suppor The hospital environment. for child their ng Foundation and in partnership prepari in parents assist to designed ions. admiss l with the RCH, we have been able hospita and tests nt, treatme cardiac to create this wonderful tool for Lyndall Cowley, mother of seven-year-old cardiac families throughout Australia,” he patient Mia Cowley, said preparing a young child for said. major surgery was challenging. “It can be a very scary The website contains videos that time for the entire family. When Mia was coming to feature the voice of the late Bud hospital before each of her four cardiac surgeries, all about Tingwell as Howie – a loveable we had at home was a basic children’s book it what her show kangaroo character. heart conditions, there was nothing to . Lyndall said l,” hospita to would be like when she came In the ‘kids’ section of the t. suppor dous tremen a website Howie guides children been have would Place ’s “Howie on a journey through the RCH, The website makes complicated information child and for t exploring the Koala (Cardiac) family friendly and will provide immense comfor she time,” difficult Ward and meeting doctors, families during what can be a very teachers and play therapists. said. There is also a video that teaches RCH Director of Cardiology Dr Michael Cheung said children about their heart cardiac coming to hospital for a simple test or for major condition. of ds thousan surgery can be equally as daunting for the nt. treatme cardiac In the ‘families’ section, Howie children that come to the RCH for tours the RCH, follows a patient “The RCH performs over 10,000 echocardiograms who is having an ECHO and and over 1000 heart operations each year. We are ECG test and talks about what tric also the Nationally Funded Centre for paedia happens before and during a heart left astic heart transplantation and also hypopl hospital admission. syndrome.” For more information on Howie’s “Having a tool that allows our patients to gain an Place, please visit the website at: understanding about life in hospital when being treated the from www.rch.org.au/howie for a cardiac condition, before admission and said. he ble,” comfort of their own home, is invalua HeartKids Victoria CEO Terry Hopkins said Howie’s Place Above: Photo shows Bud Tingwell reviewing the script when was designed and tailored to ensure families had an preparing for his role as the voice of Howie Middle: Howie’s Place host Rachael Coopes during filming

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In This Issue 2 Matters of the Heart 3 Major Achievements 4 Merchandise Specials 4 Coming Events 5 HeartKids Awareness Month 6 Tween Camp 2012 6 Scars and Cardiac Patients 7 Oscar Mann’s Story 8 MonashHeart 9-10 New RCH Turns One; Other RCH News 11 Branch News, Regional Christmas Parties 12 Tasmania News and Christmas Parties 13 Melbourne Christmas Party 14-15 Our Friends Provide Amazing Activities 16 HeartKids Australia News 2 17 Reflections 18-19 A Commitment to Making A Difference 20-22 Donations and Fundraising 24 Diary Dates

Merchandise Specials 2013 Summer Special $40.00 Offer current till end of March and includes: 2 x 1ltr drink bottles 2 x 750ml drink bottles  ucket hats (choice of 2xb colour) 2 x caps (choice of colour) Postage costs $8.50, or collect items from HeartKids main office.

Support HeartKids in 2013 Your $10.00 Supporters Pack includes: 2 x Car Window Stickers  ards (perfect for Valentines, 5xC or any occasion)  D “Embrace – Anthems of x 1 C Love” 1 x Keyring 4 x HeartKids Tattoos 4 x Blue/Red Heart Stickers Includes postage and packaging.

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To order merchandise please contact Amy Emmett: Mobile: 0411 552 264 Email: amy.emmett@heartkids.org.au Office Address: Suite 310, Level 3, 55 Flemington Road, North Melbourne

Coming Events Sharpie’s Challenge 2013 Sharpie’s Charity Challenge Foundation has supported HeartKids over the past 3 years and Josh Sharp’s daughter Zahara is a heart child. In 2013 Josh’s 9th challenge will be the Kokoda track in Papau New Guinea. The date is most likely to be from 1st - 9th June, which includes the trek and a night either side. It is likely to cost between $5,000-$6,000 (flights, accommodation and meals included as well as a porter). There are only a limited number of places on the Kokoda trek for the SCCF group so please let us know sooner rather than later if you would like to join the group. Further details will be provided once you contact us with your interest, however we need to know NO LATER than January 27th 2013. Please contact either Tracy or Josh: tracy.stanley@heartkids.org.au josh@sharpiescharitychallenge.com.au

Aussie Coupes present

HeartKids Tasmania Car & Bike Show Date: Sunday 24 February, 10am-4pm Venue: Josef Chromy Wines, Relbia Cost: Adults $5, Kids under 16 free entry The biggest and best car and bike show/family fun day in Tassie. Cars and bikes, craft stalls, food vans, jumping castles, face painting, Storm Troopers, slot car racing and so much more! Come and see over 500 show cars, including 50 from interstate. There will be muscle cars, vintage cars, hot-rods and classics. Come and get involved, bring your car, have a stall, sell some craft or knick-knacks. If you are a car lover, you cannot miss this event!

Makayla Cook’s Charity Golf Day Date: Friday 29th March Venue: Drouin Golf and Country Club Please contact Jackie Cook for more details on: 0488 201 200 Email: Jachowi@hotmail.com

KidsTown Family Picnic Date: Sunday 7th April, between 10am and 2pm Venue: KidsTown, Midland Highway, Shepparton You are invited to attend a free family picnic day coordinated by Cheryl Alexander, our Shepparton branch coordinator and sponsored by the Division 7 Kiwanis Clubs. All member families, friends and extended family are welcome. A free sausage sizzle will be provided. To attend, please register by 29th March on www. trybooking.com/cggz For booking queries contact: lynette.mccoullough@ heartkids.org.au or 0418 548 879. For event queries contact: Cheryl Alexander on (03) 5825 4005 or chezalex70@bigpond.com

HeartKids Cup (AFL - Nth Melbourne vs Sydney Swans) Date: Saturday 13 April Venue: Blundstone Arena, Hobart


HeartKids Awareness Month February is HeartKids Awareness Month. This is an opportunity for us to raise awareness for Childhood Heart Disease and the profile of HeartKids. We have a number of activities planned for February and would really appreciate your support to help raise awareness amongst the wider community.

Facebook During the month of February we will be featuring heart children, heart angels, heart teens and adults on our Facebook page and website. If you would like to participate please send a photo along with a brief summary of your CHD journey - see example below. Send your contribution to tracy.stanley@heartkids.org.au

Kimberley Class has recently had her annual cardiology appointment and she is doing just great since having a co-arctation and ASD & VSD repairs at birth. She told her Cardiologist Dr Michael Cheung that when she is big she wants “.....to help sick babies and children”. Kimmi is a gorgeous, active little girl who loves her ballet, gymnastics, piano and swimming lessons. She turned 5 in January and she can’t wait to start Prep this year! Her mum, Teena, said, “I believe that nothing will stop her from achieving her dreams!”

Money Collection Tins Please help us achieve our goal of having 1000 collection tins out in the community at places of business during HeartKids Awareness Month. If you can arrange to find collection points for tins in your town/ local community (bakery, café, newsagent…anywhere!) or place of work, then please contact sarah.currie@heartkids.org.au or 9329 0446. The 1000 tins represent the 1000 heart surgeries performed at The Royal Children’s Hospital each year.

Merchandise and Donation Stalls We will have stalls selling merchandise and collecting donations at the following Shopping Centres: Saturday 2nd

• Chadstone Shopping Centre

• Greensborough Plaza

Saturday 9th

• Eastland Shopping Centre (Ringwood)

• Box Hill Centro

Bunnings Sausage Sizzle Saturday 16th • Bunnings BBQ (Echuca)

• Bunnings BBQ (Waurn Ponds)

Metro Trains Money Collection Day Friday 22nd

Metro Trains Money Collection Day • Flinders Street • Parliament • Flagstaff • Melbourne Central Stations

Echuca Activities •

During February people will be able to donate in the collection boxes at the NAB Echuca and at TwoTarts Juice Bar in Safeway Square. Drop into the juice bar and try the new HeartKids smoothie; they are also running a colouring competition for the kids. Don’t forget the sausage sizzle at Bunnings on Saturday 16th February.

Going, Going, Gone Goatee – Deon MacKay “I have now had my goatee for 7.5yrs and I have always said I would shave my goatee for a charity. When my daughter was 6 months old she was diagnosed with a Congenital Heart Disease called Scimitar Syndrome. We became members of HeartKids Victoria and after learning of the great things that they do, I made a decision that this would be the charity I would lose the goatee for. So if you would like to see the goatee gone, please donate to a fantastic cause, please help me to achieve this goal.” http://www.everydayhero.com.au/deonmackay

Have you consid ered Raising Funds fo r HeartKids? Here are

a few ideas that you might wish to and do around th think about e Easter Break th is year. If you are interested please contact amy.emm ett@heartkids.org au or 0411 552 26 . 4 • Gold coin do nation for casual day at work • Community Easter Egg hunt at the local park • Donation of food items for fam ilie s in hospital over Easter • Raffle at your work place, local gift shop, video sto • Organise for re your local bakery to donate 50 cents for every gingerbr ead man sold ov er the Easter holidays. • Between your family members, organise to dona the money that yo te u would normally spend on Easter treats rather than purchase the suga ry treats for each other. • Have the loca l seafood outlet do nate a portion of sales for a parti cular item sold ov er the holiday period. • Find a locatio n for one of our co llection tins

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Tween Camp 2012 Friday 12th October saw the initiation of HeartKids Victoria’s Tween Camp. We had 16 bright and very loud children attend, ranging from the ages of 10-13. Most of the campers had never met before, however bonds were clearly formed even on the two-hour bus trip from The Royal Children’s Hospital to the camp-site, Camp Getaway, located in Axedale, near Bendigo. Dinner on Friday night was kindly organised by Red Rooster in Bendigo and there was plenty of food including roast chicken, chips, roast potatoes, gravy & peas! If that wasn’t enough, we had the cook’s favourite dessert - ice-cream in a cone! After that we tried to get ourselves organised and the campers to bed! Saturday morning started at a reasonable hour, as did the activities. Campers were able to test their hand at tennis and mini golf, face painting and crazy coloured hair spray, twister, card games and a few other random games that were entertaining and allowed campers to share a little about themselves. Food was never lacking and the afternoon activity consisted of all

campers and supervisors decorating their own cupcakes and attempting to eat them! Saturday night was Bingo! Hosted by the fabulous Josephine Xerri, the tension was high amongst the campers. It was also the quietest they were all weekend! Sunday came around too quickly. The morning was spent with packing (the supervisors) and spending time in the sunshine (the campers)! Families soon arrived to collect campers and stayed for a BBQ before the bus came to collect the rest of the campers and take them back to the RCH. Camp finally wrapped up about 2pm as the final dish was washed and the weary supervisors went home to recover. The weekend was a great success and enjoyed by supervisors and campers alike. Written by Erin Cervelli, Camp Coordinator

Scars and Cardiac Patients Body Image and Self Perception Body image is the way we perceive our body to be and relates to our height, size, skin and eye colour, hair, and sometimes in the case of heart children ... scars. Many parents wonder how to help their child with concerns about the scarring from surgery and this is often more common in the summer months when we shed the winter layers and enjoy some sun. You can help to build a strong body image for your child by being a good role model. This can mean not focussing on your own body flaws and showing a negative attitude. Many of us don’t notice how often we make little comments such as ‘I wish I was thinner/taller/didn’t have knobby knees’, yet these comments show a negative body image and our children pick up on these cues. Instead try to focus on the positive aspects of yourself and teach your child to do the same. Point out the positive elements of your child’s body and personality, this will help them to feel good about themselves and to shrug off any negative comments they may get. Helping your child to feel secure with their family helps them to feel stronger in dealing with their broader community of extended family, school friends, sports mates, etc. In this day of photoshop, facebook, snapchat and a range of other social media formats, children are exposed to a huge range of body images that are held

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up as ideal in our society. Whilst we as adults might recognise this, children and adolescents may not, so it is important to take the lead with your child. Point out the obvious enhancements or ‘doctoring’ of images and have a conversation with your child about how this is unrealistic. Reinforce to your child that you love them as they are. Help your child to think about different ways to respond to comments, queries or teasing, but remember, not all comments are intended to hurt, some people may make comment about your child’s scar merely because they are curious. A simple “I had heart surgery/an operation on my heart” may be enough to put an end to this or may open up room for your child or yourself to have further discussions with those who make comment. Prepare your child to be able to tell their own story of heart surgery when they are likely to find themselves being questioned, such as starting at a new school, holidays at the beach or joining a new sports group. Being aware that they may find themselves being asked questions about their scar and rehearsing how to respond will make these instances less confrontational as your child will know what to expect and how to respond. And don’t forget, humour is always a good come back - I’ve heard many a story of children saying their scar is from a shark attack or some other heroic escapade!

Get your child involved in physical activity. This can be harder with a child who has a heart condition and should be done only after consultation with your cardiologist, but a heart condition should not preclude your child from being involved in some form of healthy activity. Physical activity promotes a strong self image and builds self-esteem. Team based sports also help to build a strong peer network and your child can be recognised for their teamwork and sporting prowess rather than for their scar.

Where To Get Help If your child is experiencing bullying at school because of their scar, you should approach your child’s teacher or year coordinator. Schools have anti-bullying policies and should be made aware of instances of bullying. Most schools also have access to a school counsellor, social worker or welfare officer who may be able to provide your child with counselling and assist them to develop their body image and resilience. You can also make contact with your child’s treatment centre for advice. If you are concerned about the healing of a scar speak with a clinic nurse. If your concerns are about your child’s body image and their scar ask to speak with a social worker or psychologist.

Leanne Foster is the Clinical Lead for Social Work services to the Cardiac Unit at The Royal Children’s Hospital.


Oscar Mann’s Story Oscar, now eleven years old, was diagnosed at my eighteen-week ultrasound with a congenital heart condition. The team at the RCH said Oscar’s condition was rare and that they only come across this about once every five to ten years. Basically Oscar’s aortic valve was shaped as a four-cusp instead of a three-cusp valve. His diagnosis is aortic incompetence and aortoventricular tunnel. Oscar was born at 36 weeks. He was taken by the NETS team from Frances Perry House to the RCH where he was monitored in ICU. He was going along well until the combination of failure to thrive and needing surgery got the better Oscar, twelve days old, in ICU of him and he had openafter his first cardiac surgery heart surgery at twelve days old. Oscar was born 2340g and weighed 2500g on the day of his operation. They didn’t decide whether to repair or replace the valve until they were operating. The fantastic team, lead by surgeon Christian Brizzard, repaired Oscar’s aortic valve. The repair was certainly the least invasive and best for Oscar in the long run. So with his heart repaired and yearly visits to the cardiologist, who visits Albury every three months (we are very lucky), Oscar was going along very well. Oscar has had other surgeries that have been unrelated to his heart. A peri anal abscess at 8 weeks old, a trigger thumb repair at 2½ years, and an inguinal herniotomy and umbilical hernia repair, aged 5½ years. Unfortunately for Oscar he got his middle finger caught in a door three days after his hernia repair and, as a result, fractured his finger and the nail had to be removed. He had to undergo yet another surgery involving a general anaesthetic.

Here’s Oscar celebrating his 11th birthday with his siblings (from the left) Mitchell 4, Ruby 1½ and Zachary 5½

Left: Oscar with Dustin Fletcher, Essendon AFL player - one of his great memories from a visit to Essendon Football Club. Above right: Oscar with thumbs up, ready to leave hospital in 2008 after his second cardiac surgery.

Oscar had further open heart surgery in June 2008, when he was nearly seven years old. This was another operation to repair his aortic value. The team at the RCH, headed again by Christian Brizzard, did another marvellous job repairing his valve. He was out of hospital in eight days. This time Oscar had to stay on a drug called lisinopril. He remained on it for 3½ years. Oscar continues to be seen by the cardiologist yearly. Oscar, now aged eleven, competed in the Nail Can Hill Run in Albury, in May 2012. The course is extremely hilly and is 11.3km long. Oscar finished the race in 1hour and 22min. We are especially proud of his achievements. Well done Oscar!!!! Later in May he competed in the District Cross Country for his school. Who would have thought a boy could achieve so much after two major open heart surgeries! Oscar also plays Auskick and Under 13’s cricket and enjoys a very active lifestyle.

Oscar with his medal after his recent accomplishment of completing the Nail Can Hill Run

Written by Oscar’s mum, Jacinta Dann

Celebrations Left: In celebration of the birth of HK Alira, the Dobell family kindly made a donation to HeartKids. Centre: HK Kane Holmes with parents Russell & Candace at his baptism, held on Christmas Eve at The Royal Children’s Hospital. Right: Layla Dennehy’s first birthday celebrations included a special gift from friends, Sandy, Steve and Emilia Rositano a donation to HeartKids.

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MonashHeart

Congratulations! .

New Babies

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

Anthony and Christine Connelly announced the arrival of Mitchell John, born 4th June. A baby brother for HK Daniel.

Richard and Stacey Palcic welcomed the birth of their son, HK Ashton, on 19th June. Ashton is a brother to Jordan.

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The Wheldale/De Beer family announced the arrival of a son,   HK Henry on 26th June.

In another initiative to improve access for young patients living in the south east of Victoria, a new general paediatric cardiology clinic has commenced at MonashHeart, Southern Health. The paediatric cardiology clinic was specially developed to help manage the waiting times encountered at the Monash Children’s Wednesday paediatric cardiology clinic, offering another means of paediatric cardiologist review of the many babies and children referred with possible heart problems. Run by Dr Bennett Sheridan and ably assisted by the two paediatric cardiology fellows Dr Jayashree Mishra and Dr Lauren Shearer, the paediatric cardiology clinic is conducted each Thursday afternoon at MonashHeart, Monash Medical Centre, Clayton.

 Matthew and Amelia Smith were delighted to announce the  arrival of their daughter, HK Poppy on 7th August.

Tim Patullo and Emily Henderson announced the birth of their daughter, HK Tinnelle, on 21st August. She is a baby sister for Charlize.

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Damian and Erin Ole welcomed their baby boy, HK Callum, on 31st August. He is a brother to Katelyn.

Scott and Susan James have a new daughter, HK Annalise, born 24th September. Sister to Tayah, Riley and Cooper.

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Richard and Emma Fennell have a new baby girl, HK Hannah,  born 1st October. Hannah is a sister for Willow. 

 David and Zoe Gonzalez announced the arrival of their son,  HK William, who was born on 3rd October 2012.

Grant Gaut and Rebecca Tilley have welcomed a daughter, HK Montana, born 8th October.

Sebastian and Jessica Darcy announced the birth of twin boys, HK Matthew and Adrian, born 12th December 2012. The twins have a big brother Alessandro.

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Running the paediatric cardiology clinic (left) Dr Bennett Sheridan and Dr Jayashree Mishra

Associate Professor Sarah Hope, Head of Paediatric Cardiology Services, says that already this new clinic has remarkably reduced waiting times and waiting lists for babies and children to be seen by a paediatric cardiologist. Many parents now leave the clinic reassured of their child’s heart health, knowing the management plan and projected follow-up.

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

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

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 Cardiac technologist Daniel performs a ECG on baby William as part of his paediatric cardiology clinic assessment

Happy Birthday!

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

Support at MonashHeart Our Family Support Coordinator Sherrie McDonald visits the clin ic on Wednesdays 1.00 pm - 4.00pm

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

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Celebrations at RCH The new RCH turns one! Patients, families, staff and supporters celebrated the first anniversary of the move to the new Royal Children’s Hospital (RCH) with a vibrant birthday festival on the 30th November. Entertainers from far and wide treated patients and visitors to special performances and visits throughout the day, including: • Spiderman and Batman, who abseiled down the windows of the inpatient building, a treat from Metropolitan Window Cleaning • Players and mascots from AFL clubs Richmond, Melbourne, St Kilda, Rugby Union club Melbourne Rebels and netball team the Melbourne Vixens • Jessica Zinna from Beauty and the Geek • Wilbur the Waterdrop from Melbourne City Water • Wilbur Weekly from Melbourne Weekly • Bearemy, Build-A-Bear’s cuddly mascot • Clown doctors from the Humour Foundation • Author Ann James • Transformer characters Optimus Prime and Bumblebee from Crazigrams, and • An assortment of multitalented medical students from The University of Melbourne who amazed with their juggling, unicycling and magical feats Spiderman and Batman abseiled down the windows of the inpatient building, surprising many patients

Everyone enjoyed an assortment of activites throughout the hospital, including: • signing the massive ‘cubby’ craft cake • a jam-packed program of fun coordinated by the hospital’s Education Institute and Starlight Express Room • dance parties • meerkat naming competition by RCH community partner Zoos Victoria • golf with SNAG Golf • storytime with the State Library of Victoria Our thanks to RCH Corporate Communications for providing this article

X-Factor’s Nathaniel Willemse led the singing of ‘Happy birthday’ alongside the RCH staff choir and an excited audience of patients, families, staff, supporters and visitors in Main Street, before heading out to join Australian singer-songwriters Deborah Conway and Paul Dempsey for a lunchtime concert in the garden. The celebration had particular significance for outgoing RCH Chairman, Tony Beddison AO, as it marked his last day at the helm. Mr Beddison announced his retirement last month after eight-and-a-half years in the role. Mr Beddison cut the birthday cake, joined by Australia’s first paediatric intestinal transplant recipient, Mohamed El Shazly.

Outgoing Chairman Tony Beddison AO, CEO Christine Kilpatrick and Channel Seven’s Jennifer Keyte cut a special birthday cake, as part of official proceedings in Main Street

The move to the new RCH on 30 November 2011 saw 143 inpatients transition from the old hospital over eight hours. Patients moved across purpose-built passageways in beds, cots and wheelchairs, supported by up to six RCH staff each. All up, hundreds of staff were involved in making the move a great success. The hospital was officially opened a month earlier by Her Majesty The Queen on 26 October 2011. The event made headlines around the world and showcased the wonderful stateof-the-art facility. Since moving to the new hospital, staff at the RCH have performed: • Australia’s first paediatric intestinal transplant • 10 heart transplants • 11 liver transplants • 209,893 specialist clinic appointments • 14,630 surgical procedures The year has also seen 33,930 inpatient stays and 76,225 Emergency presentations at the RCH. RCH CEO Professor Christine Kilpatrick commended staff for their efforts in ensuring a smooth transition to the new facility. “Our staff continue to maximise our new setting to enhance the excellent care we provide the children and young people of Victoria. I congratulate all staff for their ongoing commitment to their patients and to their colleagues,” she said. The new facility continues to win numerous building and design awards, including the prestigious 2012 Dulux Colour Grand Prix Award and the 2012 Australian Institute of Architects Victorian Architecture Medal. 9


News from RCH RCH Consumer Participation Fact Sheet Patients and families, and other consumers, play an important role in improving the quality of care we provide. This fact sheet outlines why we value involvement and feedback from our consumers and different ways patients and families and members of the community can contribute to high quality healthcare at The Royal Children’s Hospital.

Christmas Hampers Our volunteers gave out Christmas hampers at RCH on Christmas Eve. Thanks to all who contributed to their preparation and distribution.

Who is a consumer in healthcare? The term consumer is defined in the National Safety and Quality Health Service Standards as: ‘Patients and potential patients, carers and organisations representing consumers’ interests.’ Therefore, we are all consumers of the Victorian healthcare system at some point in our lives, either directly or indirectly.

The importance of involving consumers in healthcare Patients and families, and other consumers, play an important role in improving the quality of care we provide. By involving consumers we: • gain the advice and input of the people who use, or could use, our service about their experiences and expectations • gain expertise and advice from other sectors on ways and experiences of improving the service they provide • improve accountability

Getting involved You can become involved at any time, by: • providing ongoing feedback about whether the service is meeting your needs, through consumer feedback systems • being involved in the development and review of patient brochures and information handouts • participating in hospital committees, including clinical care, risk management and quality improvement • telling us your stories and experiences to contribute to our understanding about the care we provide You may be a current inpatient, outpatient or parent, carer or family member, or even if you’ve never been a patient, parent or carer of a patient, your input, ideas and feedback are invaluable to us.

How to get involved Contact The Royal Children’s Hospital Quality Unit Telephone: 03 9345 4892 Visit our website: www.rch.org.au/quality

ht for Consumer input is soug these RCH committees:

y Council • The Family Advisor n committee • The Falls preventio prevention committee • The Pressure Injury ty Committee • The Surgical Quali rty Consumers working pa • The Parenting with ioration committee • The Clinical Deter rking party • The Handover wo Committee • Cultural Diversity 10

Thanks to the RCH Quality Unit for writing this article

Nurse of the Month Award

HeartKids sponsors the Nurse of the Month Award which recognises the work of our wonderf ul Koala ward nurses. Patients and families can vote for the nurse they think deserves recognition by placing their nomination in the voting boxes located in Koala war d. Congratulations to Samantha Lop ez - October Nurse of the Month, Nikki McCrone - Nov ember Nurse of the Month and as there was a tie for Nurse of the Month for December - Pippa Collins and Kell y Bubb.

IN HOSPITAL

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

RCH Morning Teas

atient families All ward, ICU and outp for morning tea, are welcome to join us Thursdays held on Tuesdays and pm in the Parent from 10:30am - 12:00 or. Lounge on the 3rd Flo eing you there! We look forward to se


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

Thanks to local Branch Coordinators

We say a big Thank You to all the Coordinators for offering their support to local families in the last year.

Branch Coordinator Role Changes

We are looking forward to offering more services to our members this year and to accommodate this we have made some changes to staff roles. Lynette McCoullough has been Branch Coordinator for a number of er years and has really appreciated working alongside our valued volunte role this from away Branch & Regional Coordinators. Lynette is moving to assist the Membership Coordinator but will continue in the role of Support Event Coordinator. to Sherrie McDonald will expand her Family Support Coordinator role with working to include Branch Coordinator duties. Sherrie looks forward . network our volunteer coordinators to develop the branch

Coffee Mornings

Lots of fun at recent Coffee Mornings at Wantirna (left) and Geelong (right)

Branch Christmas Parties Our Bendigo families enjoyed a lovely day out in White Hills Botanical Gardens on Sunday 9th December. The weather was a beautiful 24 degree day, just perfect for a barbecue in the gardens. Families enjoyed many park activities such as football and cricket and enjoyed relaxing in the sunshine. Natasha Prendergast, Bendigo Coordinator

On the 1st December, 2012 our Geelong group enjoyed another fun Christmas party. DJ Mitch provided the disco mood. The kids transformed with face painting from Fairy Brittany. There were some great giveaways throughout the day, but as usual the highlight was a visit from Santa who had gift bags for all the children and each family. I would like to thank everyone that contributed to making this day a success. These include Mitch Pilgrim (AKA DJ Mitch), Big W Geelong (especi ally Vicki Lenore), Hepburn Springs Crystal Spring Water, Alot of Faces, Alcoa-P oint Henry, Adam and Tania Rekman, Tom and Audrey Godfrey and Wayne Gibson for his help with everything (as usual). Libby Gibson, Geelong Coordinator

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Tasmania News Hobart Christmas Party The Hobart Christmas party, held on 2nd December, was a great day for both adults and children. A special Thank You to Donna & Margaret of Windermere Horse Agistment Centre for catering and use of their venue, the Superheroes, TAS Fire, Tennessee of Tennessee Face Painting, and Santa. Paul Hyland, Hobart Coordinator

Burnie Christmas Party On Sunday 9th December, the North West Tassie group enjoyed a lovely BBQ lunch at Burnie Park. Santa paid a special visit to the kids, there was face painting, bubble blowing, lots of yummy food, good company and fun had by all. Thank you to all who came along. Gail McFarlane, Burnie Coordinator

Launceston News Christmas Party

On 25th November the Tasmanian Special Children’s Party was held at the Silverdome. About 25 HeartKid fam ilies from all over Tassie attended this day. Children received a gift from Santa and were entertained by kids’ mus ical groups, free food and drink, face pain ting and rides.

Tassie Car Cruise

On 9th December the Tassie Muscle & Classic Car Cruise was held. The day attracted about 300 cars from arou nd Tassie. We all cruised to the Longford Villa ge Green, where there was coffee, BBQ, icec ream and face painting for the kids. Around $600 was donated to HeartKids.

HeartKids Car and Bike Show

This is the next major event being held again this year at Josef Chromy Wines. This event is proudly hosted by Aussiecoupes.n et. If you can help at all during this event from 9am-5pm please let Kylie know at xbfan@bigpo nd.com

Tassie Bushfires

Tassie has been ravaged by bushfire s, with many families having lost thei r homes. If anyone can help by don ating non perishable food, manche ster, etc, please contact kylie at kylie.smith@ heartkids.org for drop off. These will then be passed on to those affected. Kylie Smith, Launceston Coordin ator

Burnie Quilt Raffle

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Burnie Quilt Piecemakers, who are fantastic supporters of HeartKids, held another fun day with a beautiful quilt being raffled and raising $1,000 for HeartKids Burnie. Branch Coordinator Gail McFarlane said, ‘Thank you ladies, your support means a lot to the heart children in the Burnie area.’


Melbourne Christmas Party Families certainly had a most enjoyable time at our party held on 8th December at The Moonee Valley Race Course. The children and parents enjoyed activities including a visit to Santa, caricature and artist drawings, Dora the Explorer, Patch the Heart Lion and colouring competition, songs by Snuggle Bug from Cuddly Critters and Camp Australia activities such as inflatable lagoon, face painting, crafts, games and sports. The children loved visiting the police car that was on display and talking to the police members. They were able to visit stalls such as Pixi Foto, food stalls and vans. Everyone was treated to a piece of cake from the spectacular Christmas cake made by The Australian Cake Angels Network. WE THANK THE FOLLOWING CONTRIBUTORS TO OUR PARTY: • The Lord Mayor’s Charitable Foundation - Youth in Philanthropy • The Australian Cake Angels Network • Patch the Heart Lion Team • Representatives of the Australian Cartoonist’s Association • Caterers Cooked Meats Pty Ltd • Carmel Gerdsen as ‘Snuggle Bug’ from Cuddly Critters • TSS Westaff • Brumby’s • Kiwanis Division 6 • Victoria Police - Stuart Walton • Lloyds International • Moonee Valley Racing Club • Camp Australia • Pixi Fotos Pty Ltd • Numerous companies who have supplied donations for the raffle hampers A SPECIAL THANK YOU TO: • Christmas party committee – Margaret Patullo, Shane Larsen, Noel Scott, Cheryl Casley, Amy Emmett, Terry Hopkins, Sarah Currie, Tracy Stanley and Lynette McCoullough • Photographers – Cameron Mates, Gordon Patullo, Jo Arrowsmith, Karin Burgess, Noeleen Henry and Phil Trengove • Raffle sub-committee members – Jodie Grocock and Justine Franklin • All the volunteers who helped on the day

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• Ted Kitto, HeartKids Ambassador and Christian Williams, Young HeartKids Ambassador

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Our Friends Provide... Kiwanis: Box Hill Miniature Trains Day On 13th October, over one hundred members attended our annual event at Box Hill Miniature Railway. They enjoyed riding the trains after being treated to a sausage sizzle lunch in the park. We were lucky to have Marco the Magnificent entertain the children with his magic and balloon creations. We sincerely thank the Kiwanis Club of Waverley and Brian Mates for sponsoring and coordinating this event for us.

Kiwanis: Myuna Farm The Kiwanis Club of Sunbury offers our families this great day out every year and we sincerely thank them along with the staff at Myuna Farm. The weather was just perfect on 11th November for our Myuna Farm event. Families were able to enjoy the beautiful environment around the farm while they cuddled the baby animals in the nursery, rode the train and pony and played in the playground. Children had their faces painted by the talented Ffyona and her team, while Patrick put a smile on the children’s faces with his balloon creations (thanks to the Pass the Parcel team). Marco the Magnificent performed his magic after families were treated to lunch. Special thanks to the Kiwanis Club of Sunbury for both sponsoring and coordinating the day and to staff at Myuna farm for allowing us to use their venue.

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...Amazing Activities FunFlight On Sunday 11th November, many families enjoyed a day of free joy flights, BBQ lunch and family friendly activities. We hope you all had a great day. We had 15 families attend, with a total of 66 individuals flying across 8 aero clubs. With such a huge response to this event, put it in your 2013 diary now Fun Flight will be held again on Sunday 10th November. A special thank you to the Fun Flight team for again providing this opportunity to HeartKids families. If you have any photos or thank you messages you would like sent to Fun Flight or the aero clubs, please send to amy.emmett@heartkids.org.au

Carn the Kids Soccer Courtesy of LeasePlan and the Melbourne Victory Football Club HeartKids was able to send 30 people to enjoy all the excitement A-League has to offer. Our families received tickets, meal vouchers and some were lucky to meet Melbourne Victory players before watching the Melbourne Victory v Perth Glory match at AAMI Park on 30 November. We are grateful to LeasePlan for their ongoing support.

Variety Christmas Party On the 13th December, 50 heart children and their carers were treated to a very special Christmas party at the Melbourne Convention and Exhibition Centre thanks to Variety. 5000 children and 3000 carers were welcomed by over 500 friendly volunteers who offered many fun activities for every different age and ability. The adventurous children were entertained by carnival rides, abseiling wall and jumping castles. For the quieter ones, craft activities, play gym and animal nurseries were offered too. There were popular characters roaming around to meet and the emergency services crews turned up so everyone could hop on the vehicles. There was entertainment to be had up on stage with lots of singing and dancing and a special appearance from Santa. Everyone was well fed and exhausted by the end of the party and also left with a show bag and Christmas present. Thanks to Variety for providing our heart children with such a fun and entertaining day out.

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HeartKids Australia News Welcome to 2013! I hope that you all had a very Happy Christmas and that Santa was good to you all! HeartKids received a very special present from our principal sponsor, RFG (Retail Food Group). Just before Christmas we celebrated RFG reaching the fantastic milestone of $1 million contributed to HeartKids, and we were delighted when they announced their ongoing support for the next two years! Thank you to everyone at RFG. HeartKids’ “Grants-in-Aid” Program funds short research projects (up to one year) to support research and research capacity building in congenital and acquired childhood heart disease. We recently announced the five recipients of the Awards for 2013. The researchers come from Victoria and Queensland and their projects cover a number of broad areas of research including biomedical science, clinical research and health services research. Further information about these research projects can be found on our website: www.heartkids.org.au HeartKids Australia would like to acknowledge Wilson HTM Foundation, the Founding Partner of this program, and Kiwanis Australia, HeartKids Queensland, HeartKids Victoria and HeartKids Western Australia for their very generous support. Teen Camp 2013 is being held from 18th - 21st January at Gundiwindi Lodge, Wandin – we are sure that the campers will

have a great time! Look out for the photos on our website. We are very excited that Dr Michael Toon, a heartkid and Olympic champion, will be attending as our Camp Ambassador. We would like to thank our camp champions and volunteers whose hard work makes this camp possible. We would also like to thank our sponsors Actelion and LeasePlan, and also Device Technologies for providing our medical equipment. As you know, February is “Awareness Month” for Childhood Heart Disease with “International Congenital Heart Disease Day” on February 14th. We have been busy planning our activities and will have our calendar on our website shortly. HeartKids Australia will be the primary charity partner for the Swisse colour run in Sydney on February 10. The original 10,000 places filled very fast so another 10,000 places have been released. Imagine, 20,000 runners running for HeartKids! I cannot wait! For more colour run, you can visit www. Swisse the information on .au run.com secolor theswis With best wishes from everyone at HeartKids Australia. Kind Regards, Jann Jann Kingston CEO HeartKids Australia

Vale Dame Elisabeth Murdoch

A founding member of the Murdoc h Childrens Research Institute in 1986, Dame Elisabeth’s unparalleled generosity has enabled Murdoch Childrens to improve the health and wellbeing of children all over the world. A renowned and universally adm ired philanthropist, Dame Elisabeth ded icated her life to helping others. In the process, she influenced and inspired people from all walk s of life - from politicians and business leaders to families and children - to discover the joy of givi ng. Murdoch Childrens Chairman Mr Leigh Clifford AO said Dame Elisabeth’s vision and commitment had saved thousands of children’s lives and improved the health of many mor e living with rare and common childhood conditio ns. “Together with founding director Professor David Danks, Dame Elisabeth is at the hea rt of Murdoch Childrens. She had the foresight to recognise the importance of investing in and dev eloping genetic research, even when this field was in its infancy.” “Thanks to her unwavering dedicat ion and support, children will continue to benefit from life saving medical research.” Dame Elisabeth chose philanthrop y as her driving mission in life, giving her time and support to more than 100 charities ranging across medical research to the arts and academia.

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AC DBE

She was associated with The Roy al Children’s Hospital for more than 70 years, and was a major supporter of the Good Frid ay Appeal with her husband Sir Keith Murdoc h, who was instrumental in establishing the app eal which now raises more than $15 million each year for The Royal Children’s Hospital and research at the Institute. Mr Clifford said that without Dam e Elisabeth, the Institute could not have grown to become one of the world’s leading child hea lth research institutes, with more than 1,500 rese archers working towards improving the hea lth and wellbeing of children globally. “Dame Elisabeth’s generosity, com passion, humour and positive outlook was an inspiration to so many and we are proud to honour her legacy through our research.” “On behalf of all the staff at the Mur doch Childrens, I extend our sincere con dolences to Dame Elisabeth’s family at the loss of a mother and a great-great grandmother, a wonderful person and a national treasure. She will be sadly missed.”

Article provided by MCRI Media

& Communications


Reflections Heart Angel In loving memory of Thomasina Bridget Brasier 8.03.2012 - 13.10.2012

Heart Angel Arlo Donnelly 8.9.2012 - 30.12.2012

In tears we saw you sinking And watched you pass away. Our hearts were almost broken, We wanted you to stay. But when we saw you sleeping, So peaceful, free from pain, us, How could we wish you back with in. aga To suffer that It broke our hearts to lose you, But you did not go alone For part of us went with you, e. The day the angels took you hom S&P PRODUCTION

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

Birth Dates Paul Livingstone 2nd December 1981 Jaime Ekberg 19th December 2005 Kristiana Thomaidis 20th December 2004 James Kelleher 21st December 1991 Lucas Stone 23rd December 2009 Jonathan McGrath 29th December 2007 Ethan Hanley 16th January 2002 Shaun Wilson-Miller 23rd January 1995 Heidi Hansen 30th January 2007 Amy Dawson 11th February 2010 Andrew Lillis 13th February 2004 Phoebe Rolando 20th February 2009 Max Barker 21st February 2008 Stephen Buckman 26th February 1991

Anniversary Dates Jesse Cotter 1st December 2008 Jackson Walsh 28th December 2009 Frank Desensi 29th December 2009 Oscar Batrouney 30th December 2009 Matthew Moran 15th January 2005 Heidi Hansen 30th January 2007 Lucas Stone 31st January 2010 Georgia Morrison 17th February 2000 Andrew Lillis 19th February 2004 Mary O’Keefe 22nd February 2006 Kristiana Thomaidis 28th February 2009

A Poem for Grandparents: Double Grief The death of my grandchild And the grief of my son Pull on the heartstrings And I am undone. In secret I mourn beyond relief For I have been given a double grief. God, help me to deal with the pain and sorrow Of living without the hope of tomorrow.

Thinking of You

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

Andy Cipriano, TCF, Tallahassee, FL, 1992 17


A Commitment To... rage Support Manager receives Bead of Cou Support Manager was one of 56 families and clinicians

Tracy Stanley, our e. worldwide who were honoured with the Olympic TEAM Bead of Courag an, physici nurse, a te nomina to invited were rs Beads of Courage Membe strates child life specialist, social worker, carer or other clinician who demon ted by nomina was Tracy them. for caring while day every spirit c the Olympi d to provide has the Arrowsmith family who appreciate the support that she them and other HeartKids families. in the The Olympic TEAM Bead of Courage differs from the regular beads tric paedia a that ne milesto a nting represe of instead e program becaus ionals patient has undergone, it represents the spirit that health care profess the t connec to is show every day in their work. The purpose of TEAM BOC e Courag of Beads of rs kindness of others with the courageous Membe c theme through an intentional act of kindness. The bead gained its Olympi athletes USA r, TEAM ge eight na when Ma London in during the 2012 Olympic Games s Victoria Support Tracy Stanley, HeartKid ith cs. sm Olympi the in row ated Ar particip m carried a bead as they with heart child Willia pictured

Patch the Heart Lion visits Melbourne

In October we were very excited to have a special visitor when Patch the Heart Lion came to Melbourne! We held a picnic in the park where Patch got to meet our heart children and their families. Everyone had a lovely time and thoroughly enjoyed meeting Patch the star of the book! Patch also visited the Koala ward and made friends with the patients, families, nurses and doctors. It was lovely to see the wonderful interaction between Patch and the children - they loved him (so did the Koala ward nurses)!!!!

Hea rtK ids Mar ket Day

Emma Dwyer and Chrys McLean raised $2335 by holding a Market Day with party plan and craft stall holders, food stalls, kids activities, raffle and silent auction. They send a huge thank you to all their family and friends for helpin g out, to the 1st Moone e Ponds Scout group for the use of their hall and assistin g on the day, and to all the compa nies that donate d goods . The photos show HK Teigan ’s home- made button hair ties stall and Riorde n at the animal petting enclos ure.

Fa ce bo ok Au ct io n

Anita Grimbos from Cake Envy auctioned this gorgeous “Fifi the Poodle” cake on Facebook raising $330 for HeartKids.

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Cre eks ide Col leg e

Creekside College year 9 students held a fundraising BBQ and sold merchandise raising $562.50 for HeartKids.

Left: Rhys O’Donnell presenting the cheque to Amy Emmett from HeartKids. Above: Our thanks to these students who organised the event: Jessie Berrios, Cassie Manuel, Anna Maksimovic, Foni Salvatore, Nadine Bijelic, Rhys O’Donnell & Liam Martin.


...Making a Difference Zumbathon Who doesn’t love to dance?! And raise money and awareness for a great cause at the same time... A group of keen zumba lovers shimmied and shook their way through a zumbathon to raise money for HeartKids, inspired by Mina Marshall, a heart child who turned 3 years old a day after the zumbathon was held. Mina has had two major heart surgeries and also has a pacemaker keeping her heart going. She is a happy, bubbly, beautiful, little girl. It was a fantastic event with everyone in a positive and joyous mood.... a little tired but still smiling at the end. A big Thank You to Genesis in Mentone for holding this event for us. Thank you to Lisa for helping organise, to Ester for bringing along some fantastic prize giveaways and to Alev for donating her time instructing and last, but definitely not least, Areti for organising, donating her time and (zumba expertise) and for making the beautiful birthday celebration cake for our Mina. We hope to make this fantastic event an annual one. Megan Marshall

HeartKids Victoria is pleased to announce a new "Cause Shopping" fundraising partnership with GOthat. com where you will find the best daily deals from top Group Buying sites all in one place. Even better is GOthat donates 50% of their proceeds, an average of 5%, to us for every purchase you make.

Shop, Live and Give to us at www.gothat.com/invite/heartkidsvic

A Night of Carols WestEnd Performing Arts (WEPA) organised a Night of Carols to raise money and awareness for HeartKids. Inspired by Heart Angel Paige, a much loved member of WEPA, the members of the group sang and danced along side some very talented artists including Fatai Veamatahau and Emmanuel Kelly. The event was well attended with many glowing candles lighting up the audience. Many thanks go to Anna Stokes, Director of WEPA, for organising the event. There are plans for this night to be held annually so look out for information about next year’s event.

Racing to Help HeartKids

My name is Georgie Nowell and I’m 14 years old. I’m the big sister of 8 year old heart child Ella Nowell. My sister was born with a Congenital Heart Conditio n. All her life she has been in and out of hospitals. I have wat ched Ella go through three open heart operations and being on life support not knowing if she’s going to make it. I know how hard it is for families and the heart child through these time s. Considering 6 babies are born eve ry day in Australia with some form of Heart Disease, not many people know about HEARTKIDS. Ever since my sister was born, my family and I have been raising money and awa reness for HeartKids. Not long ago I decided I wanted to do more, so I combined my interest of Go Karting and pas sion for helping HeartKids. Bill McDonald, Managing Director of The MCG Group, helped me out with sponsorship and set me up in a new Go Kart with a HeartKids sticker kit spe cially made with help from my Dad.

I’m so excited to start racing, not just for my interests but for HeartKids. Now I finally have my own way to raise awareness and what a great way to get HeartKid s’ name out there. I hope this urges other people to help HeartKids with their own interests and hobbies, like I hav e. I would like to say a huge Thank You to Bill McDonald and the team at MCG Group - I couldn’t have done this without you! GIVE A LITTLE LOVE, HEAL A LITT LE HEART

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Acknowledging.... Broadmeadows Car & Bike Show The 4th Annual HeartKids Car & Bike show was held on Sunday 18th of November at Penola College. The day was a great success with approximately 300 cars on display, motorbikes, music, face painting, raffle prizes, giveaways and kids entertainment. With the help of generous local businesses, display vehicles, gate entry, food and drinks sales, and raffle tickets, Adam and Luisa Michielin were able to raise $13,256.50. The Michielin family are pictured in the lower left photo. Adam and Luisa would like to thank family and friends who helped organise the event and all who helped out on the day, especially the generous sponsors listed below.

Rider Bros Hella’s Printing KOMP Cranes All Cars in Scale Ron Mace Panel Works Clean Bay GL Pro Sound Auto One Niddrie D’Aprano Real Estate R & A Art Fastflex CMS Meats

Coburg Tyre Services Airport West Motor Repairs Aztec Smash Repairs Bombers Auto Port Harley Heaven Rotary Club – Pascoe Vale 123 Jumping Castle Northcote Pottery Barro Group Taverna Bros Bakers Delight – Lygon St, Carlton

Add Air Conditioning Pty Ltd Aussie Desert Cooler VPW Crow Cams Unique Cars Fuzzy Mobile Disco Ferguson Plarre Bunnings – Coburg Rebel Sports – Highpoint Office Works – Coburg Harvey Norman – Coburg Museum Victoria

Jon Ravech Pharmacy – Merlynston Office Works – Campbellfield Coles – Campbellfield Coles – Glenroy Willow – Tullamarine Tupperware Kmart Godfrey – Epping Mary Currenti Geelong FX-HZ Holden Car club Polizzi family

Cuppa for HeartKids

a success raising n during August/September was Our Cuppa for HeartKids campaig rtKids but also raise Hea for ide much needed funds $15,000. These events not only prov to thank everyone like ld wou hood heart disease. We community awareness about child HeartKids campaign this year. who participated in our Cuppa for al dress day on the 14th Leopold Primary School held a casu pa for HeartKids campaign. Cup the for December to raise money a fantastic effort. They raised $940 for HeartKids blue to represent HeartKids. All On the day the kids wore red and ds stickers for participating in the kids were given some HeartKi yed a scrumptious morning tea the day and the teachers also enjo long and Alcoa-Point Henry. supplied by Brumby’s Bakeries Gee s dressed in their red and blue Here’s a photo of Ellie Gibson’s clas uring pages in the background. clothes with their HeartKids colo

HeartKids’ dedication The Nguyen family has appreciated valued the support they to families with heart children and were at The they time the their family was given during surgeries. in’s Just , son r thei for Royal Children’s Hospital ve) of their Cuppa for They are sharing a few photos (abo raise over $2000 for HeartKids event that helped them HeartKids.

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....Special Efforts! 2040 Club Cox Plate Luncheon

The 2040 Club once again ran their Cox Plate Luncheon at the Atlantic in the Docklands on 26th October 2012. This year was the 20th anniversary of possibly one of the greatest Cox Plates of all time and the six-hundred guests were taken on a trip down memory lane by champion jockeys Greg Hall, Simon Marshall and Greg Childs who all rode in that memorable race. Other big names to entertain were Gai and Tom Waterhouse and the 2040 Club’s number one ticket holder Mal Johnston. HeartKids was the featured charity at the event and our CEO Terry Hopkins addressed the crowd before a race Calcutta was held. Proceeds from the Calcutta were shared between the 2040 Club’s four chosen charities of HeartKids, Red Kite, RDA Australia and the National Jockeys Trust. Each charity receiving $3,860. Our thanks to Adam Palmer for arranging the event and inviting HeartK ids to be involved.

Right: Champion horse trainer and key speaker Gai Waterhouse and her son, Tom, holding the Cox Plate trophies

Left: Gai Waterhouse and Malcolm Johnston, former champion jockey

w SportingBet Brownlo Calcutta s held for the

low Calcutta wa The Sportingbet Brown 2012, on the 24 September ar ye e fourth consecutiv an mi Da d an rk Ma rs John, and thanks to organise e. oic ch of ty ari ch as their who chose HeartKids and ed to grow each year The event has continu rful lou co a s wa It dees. attracted over 450 atten y nn Da of m tea s xsport crowd hosted by the Fo des. ufi uto Ko ny tho An d an Frawley, Jason Dunstall rtin Sta vided by Andrew Entertainment was pro of personations of a range im who bought with him ke Mi , an wm Ne m including Sa footballing celebrities a o als s wa ere Th Avaney. Sheehan and Bruce Mc real panel consisting of the the h wit on ssi panel discu s. hnson and Peter Daico Glenn Archer, Chris Jo re able les at the event and we HeartKids had two tab ht s dads to a welcome nig to treat some HeartKid eat Gr l. m stays at the hospita out from their long ter respite. s der $17,000 for HeartKid The event raised just un ul to and we are very gratef for John, Mark and Damian te ipa inviting us to partic his and to Tony Esposito for n. tio ibu wonderful contr

HeartKids Golf Day

The Biggin and Scott HeartKids Golf day was held at Rosebud Country Club on Friday the 23rd November 2012. A fantastic day was had by all who attended and we are certain this will become a regular event on our ann ual calendar. The course was beautifully prepared by the team at Rosebud Country Club and the eighteen groups of golfers who participated were treated to weather consiste nt with the state of the course. Participants arrived to find they could take part in a pre-game putting competition and that ther e was a car on offer for a hole-in-one scored on the 13th hole . They also had chances to win great prizes for the longest drive and nearest the pins. A four ball Ambrose was played and the round was followed by drinks and a dinner where pre sentations were made to the eventual winners, the SCCS team of Chris Palmer, Richie Pearce, Jarrod Bloomfield and Jam es Wright with James also taking out the longest drive competition. Runners up were the Mortgage Choice team of Ashley Koenig, Stephen Zamykal, Chris Johnson and Dan ny Delre. Our thanks to all our sponsors on the day including Biggin and Scott, Akambo Private Wea lth, Mortgage Choice, Jeff Wignal Motors, all our prize and auction item donors, our celebrities and ambassadors for taking the time to participate and Rosebud Country Club for thei r help in running such a successful day.

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Thank you for your recent gifts... Active Learning Childcare Centre Adroit Insurance Group Alcoa Alev Alexiadis family Altona North Chemmart Pharmacy Ampt, Santina Angela Smith Angwin, Maxine APV Engineering Ashdene Manufacturing Askey-Doran, Jennifer Austin, Stuart Axis Toys Bakers Delight, Beaumaris Bare Children’s Clothing Barro Group Pty Ltd Batchelor, Charlette Bear Box Kids Bibby Australia Pty Ltd Big 4 Biggin & Scott Black Rock Newsagency Blackmore, Sarah Booktopia Pty Ltd Bouas, Angela Bowden, Wayne Brentnall, Adam Brown, Rhondda Bunnings, Port Melbourne Burnie Piecemakers Carter, Vilma Casley, Adam Casley, Anne Cater, Shae Channel 7 Chard, Sue Cole, Betty Commandeur, Liz Compston, Julie-anne Conteh, Anielle Cotter, Julie Coult, Maria Creekside College

Cupcake Stall

Cronin, Natalie Crown Limited Currell, Brooke CWA of Victoria Daniels, Caroline Dann, Elizabeth Dee Bee Bags Donato, Rochada Dundas, Mrs K Dwyer, Emma Dyson, Ricky Emelia’s the Saucy People, Kyneton Exhibitions and Trade Fairs Faber-Castell Australia Falla, Jan Featherston, Kevin & Beryl Fitzgerald, J M Five Mile Press Fratantaro, Lauren Gaitanis, Peter Gardiner, Mrs Wilma Gatto & Co Geelong FX-HZ Holden Car Club Giblin, Lisa Grimbos, Anita Gruber, Maria Hallmark Cards Hancock, Mrs L Harrison, Mrs Marion Hawkins, Nick Hilton, Deb Holzer, Dominik Hopkins, Val Hoyts Pty Ltd ID and BM Killeen Enterprises P/L Intimo Jackson, Rachelle Jasnor P/L Jenings, Mr Dennis Jensen, Dallas JLTK P/L Jon Ravech Pharmacy Kean, Luke Keane, Shannon

Georgia Odd, sister of heart child Emma, recently ran a cupcake stall out the front of her house. She raised $60 and plans to do more stalls over the Summer. Georgia was assisted by ‘Hearty’ bear and Isaac. Her family is very proud that she came up with the idea to help others and see it through.

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Keilor Centro Kelly, Kristen Kerri’s Bundle of Bears Kilday, Alison Kiwanis Club Cobram Kmart, Altona Gate Knights, Gloria Knox Tavern Kookaburra Sport Pty Ltd Kormico Kyberd, Mrs J Lewis, Taylor Liberal Party of Australia Lombard the Paper People Lonigro, Mr & Mrs Lord Mayor’s Charitable Fund Marian College Marshall, Megan Master Electrical Company P/L McIntyre, Esther Melrose, Doug Meyer Cookware Michielin, Luisa Miers, Chelsea Myer Head Office Narusawa, Katsura Nature’s Gift Nodin, P and C Northcote Pots Australia Pty Ltd Odd, Miss Georgia Ollington, Shona Pepsico/Smiths Crisps Perkins, R and R Peter McInnes P/L Peter, Gienda Pignataro , Isabella Portelli, Guilia Premix King Prendergast, Corey Price, Judith Prosser, Amanda Rebel Sports Store Southland Reid, Wendy Revolution Personal Training RM Hall

Roksan, Libinaki Rolando, Heather Rositano - Sandy, Steve and Emilia Ruby Tuesday Jewellery Russell Factory Outlet Saka Water Sanchez-Partida, L Shortal, Matthew Singh, Kuldeep Slade, Naomi Smith , Mr Alan Smyth, Kimberley Spiers, Mr Barney SportzBidz Pty Ltd St Dominic’s Primary School St Kevin’s Templestowe Steadmark P/L Stephens, Neil Suleyman, Jules Tang, Peter & Joyce Tasdom P/L Terrill, Mark Terry White Chemists, Sunbury Thomas, Fr. Donald Thomas, Mr J Thomson, Anneke Toyworld, Sunbury Transpire Pty Ltd Tripodi, J Trpkovski, Sonja Tupperware - Jane O’Toole Valet 5 Valley Xpresso Variety Club Varro, Karyn Vella, Sarah Vuly Trampolines Walker, Jonathon Watkins, Barbara WestEnd Performing Arts Whitehorse City Council Whitvan P/L Wholesome Bean Williamson, John Z Couriers

Fairy Gathering The Annual Fairy Gathering, held on Saturday November 10th, would like to thank the hundreds of fairy folk that attended the Botanical Gardens of Kyneton. With various family friendly activities and a BBQ lunch, the day was a great success. You all helped raised a total of $1,390.00 for HeartKids families.


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

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

(thank you, an official receipt will be sent)

p Cheque

p Money Order - payable to HeartKids Victoria

p Visa

p Mastercard

Credit Card No:

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

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

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

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

p I would like to make ongoing donations to HeartKids

p Becoming a Member (Membership is free)

p Becoming a Volunteer

pP  articipating in fundraising & awareness

p Business sponsorship

pM  aking a regular gift through my bank

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

p Leaving a gift in my will

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

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

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

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

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

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

Sponsors and Supporters National:

State:

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Diary Dates

Teen Camp artKids Australia He y ar nu Ja 0 -2 18  areness Activities  Month of February - HK Aw tails on page 5 de e - se ow   nday 24 Feb - HK Tasmania Car & Bike Sh Su  Run for the Kids  Sunday 24 March peal - Good Friday Ap  Friday 29 March ity  ayla Cook’s Char ak  M ch ar M Friday 29  Golf Day nic  Pic ily m Fa n rto Town Sheppa Sun 7 April - Kids  rt  turday 13 April - HeartKids Cup, Hoba Sa ll  artKids Gala Ba  Friday 7 June - He lar cu ta ec Sp s ed - HeartKid  Date to be confirm or e  sid in k ec ch these events For more about  idsvic.org.au tk ar he  go to www.

MELBOURNE METRO BRANCHES Bayside Sherrie McDonald 0431 544 510 sherrie.mcdonald@ heartkids.org.au East Bentleigh Maggie Stavrou (03) 9563 7133 maggiestavrou@live.com.au Bundoora Amy Heafield 0421 518 366 amy.heafield@heartkids. org.au Dandenong Lucy (Fatima) Hussain 0430 738 820 Pakenham Joanne Arrowsmith (03) 5967 7083 joarrow@bigpond.net.au Tullamarine Lynette McCoullough (03) 9333 1586 lynette.mccoullough@ heartkids.org.au Wantirna Janita Felici 0422 976 024 janitafelici@gmail.com REGIONAL BRANCHES VICTORIA Albury/Wodonga April Schubert (02) 6056 6448 0407 551 967 april_peter@internode. on.net

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

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

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

www.heartkidsvic.org.au

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Contact Details Bairnsdale Caroline Foard 0438 928 821 cfoardy@yahoo.com Ballarat Naomi Keath (03) 5332 3679 0408 559 535 mysissa03@yahoo.com.au

Wangaratta Karyn Howard 0412 988 285 karynh74@gmail.com

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

OVER 18’s Erin Cervelli (03) 9513 9030 with hearts4heart - Support for Adults Heart Disease Tanya Hall 0426 240 636 TASMANIA Bendigo info@hearts4heart.net.au Burnie Natasha Prendergast 611 330 hearts4heart.net.au 0448 y Amanda Rile (03) 5441 8262 or 0421 590 169 .com ond bigp y1@ .rile nda KAWASAKI DISEASE ama goliathgroup@bigpond.com 2127 6431 Shirley Mates (03) 9894 1257 (03) ne Gail McFarla ma Moa uca/ Ech akfn@optusnet.com.au 0488 033 789 u Tracey Hard om nd.c Website: www.kdfoundation.org.a themcfarlane4@bigpo 0438 962 056 KABUKI SYNDROME Devonport tracnsteve@bigpond.com 661 Stacey McKiernan Claire Gluyas 0408 351 Geelong .uk o.co (03) 5275 1542 aho e@y richardsclair Libby Gibson (03) 5250 2439 stacey@sakks.org Hobart 0411 057 905 Website: www.sakks.org Paul Hyland (03) 6247 8435 libway2000@yahoo.com HYPOPLASTIC LEFT HEART 0418 561 504 Horsham om SYNDROME paul.hyland1@bigpond.c Gaynor Baker (03) 5384 2280 & SIMILAR CONDITIONS ceston Laun om nd.c igpo y@b entr mtbcarp www.hearts-of-hope.org Kylie Smith (03) 6393 6240 Leanne Amarant (Victoria) Latrobe Valley 0448 983 587 453 955 0427 ner Wer (03) 5358 2945 Sophie kylie.smith@heartkids.org.au Leanneamarant@hotmail.com sophia.werner@bigpond.com Csaba Ovari (Tasmania) Portland INTERSTATE 2503 (03) 6229 8169 Kerry Sluggett (03) 5523 Contact details at: csaba.ovari@hearts-of-hope.org 0418 312 320 www.heartkids.org.au LONG QT SYNDROME (LQTS) ksluggett@iinet.net.au Sherrie McDonald 0431 544 510 UPS GRO ST Shepparton SPECIAL INTERE u sherrie.mcdonald@heartkids.org.a Cheryl Alexander BEREAVED FAMILIES EMAIL or g.au s.or .sad www (03) 5825 4005 SUPPORT www.sads.org.uk/ rg/ pe.o f-ho chezalex70@bigpond.com rts-o hea ww. http://w T. CARDIOMYOPATHY ASSN of AUS South Gippsland support/bereavment/intro.htm u/ rg.a Website: www.cmaa.o Kerrie Disney (03) 5182 5531 HEART TRANSPLANTS 608 MUSLIM FAMILIES 0409 950 Belinda Holden 0400 714 182 Lucy (Fatima) Hussain urme2@tpg.com.au PACEMAKERS 0430 738 820 4 -698 Stawell Mandy Tichelaar (03) 9728 MULTIPLE BIRTHS Leanne Amarant 22q11 il Schubert (02) 6056 6448 Apr (03) 5358 2945 or 0419 864 412 Audrey Cater (03) 9394 7965 om ail.c hotm ant@ 0407 551 967 leanneamar 0420 500 905 l_peter@internode.on.net apri audrey.cater@bigpond.com Wonthaggi Cath Methven 0429 325 643 catmet73@gmail.com

2012-2013 Summer HeartKids Victoria-Tasmania Magazine  

Magazine for families and friends of HeartKids Victoria-Tasmania

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