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Summer 2016-2017

Quarterly Magazine for Victoria and Tasmania

* Christmas Celebrations * Final Edition *

Volume 26 Issue 4

HeartKids at The Block





Matters of the Heart State Manager 2017 will take on a whole new meaning for everybody at HeartKids. It not only signifies a “New Horizon” for our Organisation, but also allows us to reflect upon the role so many people have played in making HeartKids in Victoria and Tasmania such an important part of people’s lives. Even the magazine has played a pivotal part in establishing who we are, what we do and creating a sense of family by providing information and communication to so many of our supporters. In fact this final edition will mean that almost 100,000 copies have been printed and distributed throughout its life time………a “best seller” by any measure. To everybody who has contributed and made the magazine so relevant, a massive thank you. Particularly (in recent times) Tracy Stanley, who so diligently puts the articles together, Margaret Patullo, who does the desktop publishing of the magazine and ensures everybody gets their copy, Lynette McCoullough for proofreading, Documents on Call for printing the magazine free of charge and Fuji Xerox for providing the paper …..thank you all so very much. 2017 will also see the formal winding up of HeartKids Victoria Inc. and it would be remiss not to make special mention of the 120 dedicated and selfless people who have served tirelessly on our Committees and Boards over the past 26 years. You should all be every proud of your collective achievements and how you have set us up to play an important role in HeartKids Limited. HeartKids will continue to keep all our friends and supporters connected through our website, Facebook and other social media channels… please look out for us. Kind regards Norm Norm Hutton State Manager

Permission to reprint any of the personal stories in this magazine is required from the author or the Chairperson. Any other articles may be reprinted with an acknowledgement to HeartKids. Please note that articles published in this magazine do not imply endorsement and may not reflect overall views of HeartKids. Also note that the opinions expressed in child stories represent personal experiences and that medical details are specific to each case. Although the conditions may appear similar to your child’s, other details may differ. Parents requiring more specific information should check with their child’s cardiologist.


Victoria/Tasmania Employees * State Manager Norm Hutton 0409 874 452 * Family Support Manager Tracy Stanley 0478 091 773 * Family Support Coordinator Sherrie McDonald * Youth Support Coordinator Rebecca Peters * Family Support Coordinator Helen West * Member Support Officer Lynette McCoullough * Member Support Officer Margaret Patullo * Finance and Administration Officer Jason Alabakis * Business Relationship Manager Luisa Kenos

We proudly support children with heart disease and their families throughout Victoria and Tasmania. For Tasmanian enquiries - please refer to the back page for our Tasmanian Branch Coordinators’ contact details.

Front Cover Photo: The Block Open Day with contestants Will & Karlie Photo Courtesy of Impress Photography Thanks to all who sent photos and information for this edition.

s. Thanks to Fuji Xerox and Documents On Call for printing our magazine images. digital some of g processin Thanks to Gordon Patullo for post

Coming Events Two Feet & a Heartbeat Virtual Event Join our Virtual Two Feet and a Heartbeat Event in Victoria/Tasmania, raising funds for Awareness month. Choose between 2.1, 21 or 210 KM to achieve throughout December through to February. You can walk, run, swim or cycle, it's up to you. Get the family together and set a fundraising goal and distance target that you can achieve together. To get started open an online supporter page. Your page will calculate the distance you achieve from 1 December – 28 February. For this to happen you will need to connect your supporter page with a mapmyfitness account. VicTwoFeetAwarenessMonth2017

Sweetheart Day - 14 February 2017 Please see page 4

Sunset series: Melb Zoo, Princes Park, the Tan Experience the excitement of running through three of Melbourne’s favourite venues at dusk. These iconic Melbourne locations will be transformed with a selection of great food, live music, Sunset Bar and areas to sit down and relax after your run. Just some of the many reasons why this is one of Melbourne’s favourite running events. Grab your friends, make a night of it and celebrate running in style. • 1/2/2017 – Melbourne Zoo • 15/2/2017 – Princes Park • 1/3/2017 – The Tan

Paragliding Ever wanted to jump off a cliff?? On Saturday 25 February 2017, Paragliding Victoria are offering you the opportunity not only to Paraglide but to also raise money for HeartKids. It will be held at Torquay, near Bells Beach. BBQ/ picnic lunch afterwards. All you need to do is pay $150 deposit to secure your place, and then raise $1000. Well, what are you waiting for?

Run The Rock - Saturday 1 April Escape the city, take on Hanging Rock for an off-road run with a difference, just a one hour drive from Melbourne. Choose from the 5km run or walk, 12km run, 20km run and the 2km kids run. Join our team at

Shepparton KidsTown Picnic Date: Sunday 2 April 2017, Time: 10.30am - 2pm Venue: SPC Ardmona KidsTown, Midland Highway, Mooroopna Courtesy of the Kiwanis Division 7 clubs, families with a heart angel or heart child and their extended family are invited to attend a free picnic and family fun day. Free entry to KidsTown Adventure Playground and a sausage sizzle lunch will be provided. Register via Enquiries about the day, contact Cheryl: or 0408 547 418 Any problems with booking, contact Lynette on: or 0418 548 879

The Run for the Kids - Sunday 9 April 2017

Good Friday Appeal - Friday 14 April 2017

In This Issue

3 Coming Events 4 Sweetheart Day 5 HeartKids at The Block 6-7 Families Enjoy Christmas Celebrations 8 Rheumatic Heart Disease 9 The History of our Magazine 10-11 Members Participate in Amazing Activities 12 Branch News 13 Tasmania News; New Babies 14 Support Matters 15 Hospital Happenings 16 Hitting Heart Disease For 6 17 Reflections 18-19 Heartfelt Thanks for Your Support 20-21 A Commitment to Making a Difference 22 Poppy at the Races; Kensington Market 22 Donation Acknowledgements 23 Sponsors and Supporters 24 Contact Details and Diary Dates

Makayla Cook's Charity Golf Day Date: Friday 14 April, Time: Assemble at 9:00am Venue: Drouin Golf and Country Club Tee off at 10:00am in a three person Ambrose event. Drinks for purchase all day, sausage sizzle on course. Post golf presentations and function in the club rooms. A great day out, hole prizes to be won on the day. Contact Jackie Cook 0488 201 200 or for further details or to request an entry form!

Alan Lord HeartKids Fun Day 2017 Date: Sunday 23 April, Time: 10.00am - 1.00pm Venue: Steam Locomotive Society of Victoria, 128 Rowans Road, Moorabbin Thanks to the Kiwanis Club of Moorabbin, families who have a heart child or heart angel are invited to attend this fun day out. Please arrive at 10am to register. Free train rides from 10.30am and a free sausage sizzle lunch at 12 noon. We hope to also have face painting and other fun outdoor activities. RSVP: 14 April. Register via

Razzamatazz 2017 We will be offered free tickets to the Razzamatazz show in the locations listed below. Registrations will be open once times are advised. Please keep checking our Events calendar for further details. Burnie Thursday 27/04/17, Burnie Arts & Function Centre Devonport Monday 24/04/17, Devonport Entertainment and Convention Centre Launceston Wednesday 26/04/17, Door of Hope Melbourne Saturday 29/04/17, Melbourne Convention & Exhibition Centre

Super Boss Day Save the Date - 26 May 2017 For more details please visit


Sweetheart Day

Sweetheart Day, held every year on 14 February, is a chance for all Australians to get together to help our Australian heart kids by funding vital support and life-changing medical research into childhood heart disease.

Help us fight CHD and be a sweetheart: • Save the date, 14 February, (or any time in the month of February) and fundraise for us. • Register your workplace: • Organise a morning tea in your home or at a local venue and collect donations #8toomany Merchandise • Contact our office on (03) 9329 0446 to purchase merchandise, see left. • Premium Pin - $10 • Register your school:• Standard Pin - $5 interest/ • Pen - $5 • Hold a #SweetheART competition in your school, where you ask your students to get creative in sharing CHD facts to the wider community. Visit for details. • There are some great prizes on offer too! Please visit the links above for all the details. • Share #CHDFacts, so more people are aware of childhood heart disease and its effects in Australia • Participate in the Sweetheart Day Photo Challenge on Instagram • Fundraise at shopping centres, train stations, city streets or request a donation tin for your workplace or local store (and return by 28 February 2017):

Sweetheart Day volunteers – expression of interest We need lots of volunteers to spread the word about HeartKids and raise funds in the days leading up to Sweetheart Day. The more the merrier – ask your family and friends if they will get involved too. You must be over 16 years of age to volunteer. If you are passionate about HeartKids and want to volunteer: • to help on a stall to sell merchandise and shake a money tin on Saturday 11, Sunday 12, Monday 13 or Tuesday 14 February at various shopping centres (Victoria Gardens, Forest Hill, Waverley Gardens, Keilor, Broadmeadows, Epping or your local shopping centre) ....... OR • to sell merchandise and/or shake a money tin in the Melbourne CBD on Saturday 11 or Tuesday 14 February or at a local train station on Tuesday 14 February ....... ....... please express your interest via This is an expression of interest only and you will be contacted once all details are confirmed. For enquiries please contact Volunteer Coordinator, Lynette, on or 0418 548 879.



HeartKids at The Block The 2016 series of The Block saw contestants renovate a heritage-listed soap factory in Port Melbourne. Our wonderful supporters, Biggin and Scott Real Estate, were once again involved with The Block – this year Biggin & Scott Port Melbourne represented contestants Will and Karlie. Will and Karlie along with Emma and Vanessa from Biggin & Scott did a tour of Koala ward and met some cardiac patients. Later that afternoon Will and Karlie hosted a Pokemon themed afternoon tea for some of our heart children in their apartment. Our guests enjoyed delicious baked goodies from The Cake Angels and were entertained with games and balloon art and loved the opportunity to see the incredible renovation. The HeartKids/Biggin & Scott marquee at the Open for Inspection on 30 October was extremely busy selling Bacon and Egg Rolls, Lollies, Drinks and Will & Karlie tattoos. Will and Karlie visited the marquee twice during the day and were extremely generous with their time signing autographs and having photos taken. The final was exciting with Will and Karlie’s apartment being the first auction. Auctioneer David Lack did an amazing job knocking down the apartment at $2.6million, a massive $715,000 over reserve. It was nerve-wracking watching the rest of the apartments go to auction but none could match Will and Karlie’s result making them the winners of this series. HeartKids would like to thank Will and Karlie and the Biggin & Scott Port Melbourne team – David, Will, Emma and Vanessa for involving us and providing fantastic opportunities to raise awareness about CHD. Congratulations on a fantastic outcome – we were all thrilled with the result!


Our Families Enjoying... Variety Christmas Party

the Annual Variety On Thursday 1 December, 67 heart children were privileged to attend was full of fun activities It . Centre Christmas Party at the Melbourne Convention and Exhibition faces. 's and it was wonderful seeing the smiles on the children shoot basketballs, pat The children were lucky to be able to go on rides, play carnival games, the smiles on the kids’ the baby animals, enjoy art and craft tables and much more. Seeing was heart-warming. ers faces when having photos taken with some of their favourite charact to name a few. Pig Peppa Some of them were Sesame Street, Frozen, Transformers and was turn up and have fun. Lunch, snacks and drinks were also provided so all you had to do ts. presen g receivin and Santa The children also loved seeing in this wonderful event. It was a fabulous day, thank you Variety for including our heart children

Christmas Party for Special Children at Launceston

Christmas Party for Special Children at Albury-Wodonga

On Saturday 12 November, Chilli FM, in proud association with Make-A-Wish Australia, hosted their 20th anniversary Christmas Party for Special Children at the Silverdome in Launceston. There was a full day of fun including a three hour stage show hosted by Sparky the Clown as well as many local celebrities. Activities such as merry gorounds, jumping castles and face painting kept children entertained and they were treated with food, drinks, lollies and ice creams. Santa appeared on stage before he went off to his toy room which was full of presents that children took home. We thank the organisers for offering our families a great day out.

The party at the Wodonga Sports and Leisure Centre on Saturday 26 November was exciting for our families and children. The day was full with rides, face painting, entertainment, food and drinks and stage shows. The absolute highlight for the children was that they got to meet Santa Claus and received their very own Christmas presents. We thank the organisers of this party for allowing our families to enjoy this Christmas celebration.


...Christmas Celebrations Christmas Party for Special Children, Melbourne On a beautiful sunny day, excited children and their families enjoyed plenty of activities, watched entertainment and relaxed for lunch at the grounds of Moonee Valley Racecourse. Santa arriving on a vintage fire engine was a highlight and The Cake Angels' Santa Airways cake was truly amazing - they never cease to surprise us with their creations! We are so lucky to be invited to attend this wonderful party with HeartKids families making up a large number of attendees along with families from other charities. HeartKids would like to acknowledge the time and effort that goes into preparing this event. We thank all the staff and volunteers of The Christmas Party for Special Children who made this day possible. Thank you also to our own HeartKids volunteers who manned our marquee.



THINGS Rheumatic Heart Disease YOU NEED TO KNOW:

Currently, Australia has among the highest recorded rates of Acute Rheumatic Fever and Rheumatic Heart Disease in the world, and it‘s a significant cause of disease among Aboriginal and Torres Strait Islander children. Aboriginal and Torres Strait Islander people living in rural or remote settings, particularly across central and northern Australia, are known to be at high risk. Other Aboriginal and Torres Strait Islander people living in urban settings, as well as some immigrants from developing countries may also be at high risk. Acute Rheumatic Fever (ARF) is an illness caused by a reaction to a bacterial infection with Group A Streptococcus which can affect the heart, joints, brain and skin, cause fever, joint pain and other symptoms, lead to hospitalisation, cause heart damage called Rheumatic Heart Disease. Rheumatic Heart Disease (RHD) is damage to the heart caused by one or more episodes of Acute Rheumatic Fever. When the heart is damaged in this way, the heart valves are unable to function adequately, and heart surgery may be required. RHD is a chronic, disabling and sometimes fatal disease. Specific management requires treating the symptoms and preventing worsening of the disease, which also depends on the heart valves involved and the extent of the damage. The management principles for RHD include: • Regular secondary prevention treatment for people at risk of recurrent ARF • Reliable access to a medical specialist • Reliable access to dental services • Reliable access to echocardiography services • Adequate monitoring of anticoagulation therapy (for people with atrial fibrillation and/or artificial heart valves) • Access to investigation and surgery services (for people with moderate or severe disease). All children with RHD from the Northern Territory who need surgery come to The Royal Children’s Hospital, Melbourne. There are usually 30 – 40 children a year who have to travel to Melbourne for their surgery. HeartKids works closely with the hospital teams in the Northern Territory and The Royal Children’s Hospital to ensure these children and their families are supported through this journey.


Graphics courtesy of the Menzies School of Health Research and RHDAustralia

The History of our Magazine

5 year and 10 year Anniversary editions The newsletter was revamped after a few years and produced in magazine style via desk-top publishing by a Committee Member using her own computer and then sent to a commercial printer. The following year Heartkids purchased a computer and no longer needed to rely on Committee Members having one of their own.

The first edition of the Heartkids newsletter was organised by members of the Committee and published in Winter 1990, within a month of the inaugural meeting of Heartkids Vic Inc. In the first few years the master copy for each quarterly edition was typed on an electric typewriter, and then later by computer using Word.doc with a DOS operating system. It was photocopied on donated paper, then collated by hand and stapled, with the front page being a different colour each season.

Quarterly Newsletter Heartkids Victoria

In 2006 colour printing was used for the front and back cover.


support awareNess researcH adVocacy Autumn 2007

ARN: A0021470B ABN: 16 336 986 918

Volume 16 Issue 4

HigHligHTS in THiS iSSue

Celebrations and Achievement s

Teen Camp 2007

In 2005-2007 a colourful series of Teen Inserts was produced and distributed with the main newsletter. For 15 years from 1990-2005 the quarterly newsletter was produced with black printing.

VICTO RIA and Tasmania Quarterly Newsletter for Victoria

Volume 18 Issue 3


Autumn 2011

The previous motto of 'Family Support, Awareness, Research' had 'Advocacy' included.

"We joined HeartKids not long after Adam's diagnosis. I love receiving the HeartKids newsletters and love reading the amazing stories about other heart children. I read these stories to Adam so he knows he is not the 'only one' with a heart condition." ~ Cheryl, mother of a heart child.

In 1993, 150 copies were distributed each edition. By 2009, the number had increased to 1000 copies.

Summer 2008-09

Honda Bear Project

Merchandise Sale

Quarterly Newsletter for Victoria and Tasmania

and Tasmania Quarterly Magazine for Victoria

Volume 21 Issue 1

Volume 25 Issue 1

Autumn 2015

Thank You Many people have played a valuable part in the production and distribution of this magazine, too many to name all the individual volunteers. Our sincere thanks to all:

* Team Melbourne Mega Sports Clinic promotes healthy active lifestyle

* FunFlight 2008

all Scenic joy flights, big smiles for





• Editors

* HeartKids Awareness Month * Teen Camp 2011 * Children Reaching Milestones support


Full colour printing commenced in 2008 and we used a photo front cover to feature recent activities. Also starting in 2008, each edition has been uploaded to our website. In 2009 we began emailing a PDF version of the newsletter as members opted-in. In 2012 the terminology changed from 'newsletter' to 'magazine'. A digital version of the magazine has been published online since 2012.




Boss Day * Super -In-Aid * Grants * Teen Camp •



• Contributors

• Writers, including parents and heart children • Typists • Proofreaders •


The magazine has created a link between families whether in hospital, living locally or far apart. Each edition included a heart child story, news of family support, Cardiac Unit and technology updates, community awareness and fundraising activities. It also gave an opportunity to thank our Sponsors, and all who generously donated to HeartKids. For example, in the last six years 2000 to 2500 copies of each quarterly edition have generously been printed by Documents On Call at no cost to HeartKids, with paper kindly donated by Fuji Xerox.

• Graphic designers

• Photographers • Image processors • People who collated inserts • Volunteers who put labels on envelopes, both individuals and a Kiwanis Club • Volunteers who packed hundreds of envelopes, keeping them all in the post office preferred order to save on postage costs • Pro Bono printers and paper suppliers


Our Members Participating... Fun Flight

Moto Expo

A number of our members had a chance to “fly” on Sunday 13 November at Latrobe Valley Aero Club and on 27 November at Point Cook Aero Club. Unfortunately the weather conditions prevented other aero clubs from going ahead with the event this year. We sincerely thank the team at FunFlight and the members of the two aero clubs for this opportunity and would like to acknowledge both the financial and personal gift they have offered our families.

Thanks to a generous supporter some of our in-hospital families enjoyed the Moto Expo Melbourne at The Melbourne Showgrounds in November.

Box Hill Miniature Trains

World Festival of Magic Thank you to the following groups for allowing our members the opportunity to watch this year's World Festival of Magic show. Our families thoroughly enjoyed it. • Lions Club of Albury Inc. • Lions Club of Ballarat Inc. • Lions Club of Burnie Emu Bay • Lions Club of Devonport • Lions Club of Geelong Hamlyn Heights Inc • Rotary Club of Hobart • Lions Club of Riverside Inc • Lions Club of Melbourne Markets Inc • Lions Club of Mildura


The miniature train was in action again with our heart children and parents on board on 22 October. Our friends at the Kiwanis Club of Waverley generously organised the event. A tasty sausage sizzle lunch, HeartKids balloons and face painting were also on offer on the day. Thank you Brian and the Kiwanis team! Amazing Activities Tween Camp 2016 Early December saw the annual HeartKids Victoria/Tasmania Tween Camp held at The Portsea Camp. December you say? Yep, we like a challenge and that is what the lead up was - with conflicting schedules (volunteers) & the last minute cancellations, on Friday 2 December we hopped on the bus and we got there! We all arrived, tired, hungry & hesitant but a super large slice of lasagna and a quick pep talk from our favourite Heartkid sibling and volunteer David (with a little help from our veteran camper Zoe), everyone was coming around to being at camp. Saturday morning started well and just got better. There were activities (high ropes and raft building), which pushed the campers to try something new as well as reach new heights! We also had the fabulous team from The Art Cabriolet who entertained the campers by teaching them how to create a dream catcher. And all campers built with gusto! Saturday afternoon saw the sunshine out in full force so we all went down to the beach to hunt for shells. Hunting for shells lasted under three minutes as everyone quickly jumped into the sea to cool down! Saturday evening saw another large & fabulous meal then all campers were given some free time where everyone participated in various sporting activities. Sunday morning arrived far too soon which meant packing up, exchanging signatures on their calico bears and one final activity before lunch. Then in the blink of an eye it was time to go home. Overall Tween Camp 2016 was fabulous! The campers were great – a shout out to Zoe & Darcy who had me in tears (the good kind!) over the course of the weekend. But no camp can be run without a Crew. As a veteran camp manager I have become particular with the team I put together to assist to run a camp. I am honored to have a group that, over the years are the same fabulous people who come along each time, no questions asked and volunteer on camp. To Steve, Lauren & David, along with our newer team members, Tony and Michelle as well as our two mentors, Chelsea and Callum, Thank You for your time, support and flexibility – I love volunteering with you all! Looking forward to Tween Camp 2017! Erin Cervelli


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. Follow us on Facebook or watch the Events Calendar on our website for upcoming Catch-up dates:


Our Mildura Branch organised a Christmas Catch up at Park for Play. The children enjoyed face painting and a visit from Santa.

Bendigo Our Bendigo Branch organised a Family Christmas BBQ at White Hills Botanical Gardens with the Kiwanis Club of Bendigo providing lunch. The group released balloons in memory of heart angels Thomasina, Blake and Jacob.


was well The Geelong Branch Christmas Party held on Friday 9 December supported with over 70 people in attendance. adults It was a fabulous evening as the children had a great time and the had an opportunity to chat. and from Donations were received from Big W, Amart Sports Waurn Ponds iated. apprec much was Audrey and Tom Godfrey. Their support of the event


Tasmania News Hobart Christmas Party The weather was perfect for the Hobart branch Christmas party at Richmond Zoodoo Zoo. Guests enjoyed a guided walking tour to feed the animals, rides on the safari bus, a special visit from League of Heroes characters and BBQ lunch. A big thank you to Hill Street Grocery who kindly donated veggie burgers and a gingerbread house. The children were excited when Santa arrived on the Richmond Volunteer Fire Brigade Truck and were thrilled to receive their gifts from Santa. We’d like to thank Hobart coordinators Kaye Nugent and Paul Hyland for organising the Christmas party and the following for helping to make the event a success: • Zoodoo Zoo • Tasmania Fire Service Richmond Volunteer Brigade • Hill Street Grocery • League of Heroes • Rick Cazaly • Michael Van Der Veen (Volunteer helper) • Theresa Guerin (Volunteer helper) • Bill Nugent • Sam Nugent • Merran Hyland

Save the Dates....

Aussie Coupes present their

7th Annual Car & Bike Show Date: Sunday 5 February, Time: 10am - 3pm Venue: Josef Chromy Wines, Relbia Road, Launceston Entry: Adults $5, Children under 12yrs Free All makes and models of cars & bikes welcome on the day.  ttractions: Local Tasmanian wines & beers, Craft stalls, Other A Tasty food, Pony rides, Mechanical bull, & more Proceeds will be donated to HeartKids.

Hobart 2017 Catch Up Dates

In 2017 Hobart families will be meeting four times a year at Ronald McDonald House in Collins Street, Hobart. Please note the catch ups will be at 2pm on the last Saturday in the month as follows: • 27 May • 25 February • 25 November

• 26 August

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New Babies

Congratulations and our very best wishes to all these families who have welcomed new babies in recent months. Marco and Jo-Maree Airulo are proud to announce the arrival of HK Ethan, born 22 July. Grant King and Megan Wilson are excited to announce the birth of HK Willow, born 18 September. Little sister to Logan, Harrison and Ryan. Tom and Courtney Sanderson are delighted to announce the birth of HK Liberty on 13 October. Danielle Grant-May and Steve May are so proud to announce the birth of their daughter HK Katelyn Isla. She was born on 22 October and is a little sister for Charlotte. Jake Carbis and Teagan Mitchell are excited to announce the arrival of HK Kadyn Carbis-Treacy on 2 November. Dean and Natasha Lobban are delighted to announce the arrival of HK Harriet, born on 10 November. Ben and Emma Miller are excited to announce to arrival of HK Charlotte, born 26 November. Little sister for Logan. Justin and Jessie Ballantyne are happy to announce the addition of Louie to their family on 28 November. Little brother for Georgie and HK Tom. Joe and Sara Shea are proud to announce the arrival of HK Charlotte, born 31 December 2016.

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Happy Birthday!

A very ‘Happy Birthday’ to all the heart children and their family members celebrating birthdays during Sum mer! 13

Support News Support Matters

Tween Bowling Social

Welcome to the Summer edition of our magazine.

On Sunday 27 November we held a HeartKids Youth Social event at Strike Bowling Melbourne Central for young people with heart conditions aged 10-13 years. Everyone enjoyed ten pin bowling and a pizza lunch.

We hope you all had a lovely holiday season. As always our thoughts were with our bereaved families and those families who had children in hospital during this time. This is the final issue of the HeartKids Victoria/ Tasmania magazine following the transition to HeartKids Limited. You can still keep up-to-date with HeartKids via our website and E-News – if you have recently changed your email address please notify us via email heartkids@ The power of social media to connect those who need each other most during life’s most challenging times is extraordinary! HeartKids relies on social media to communicate, connect and care. You can connect with HeartKids on Facebook, Twitter and Instagram – please follow us on Facebook @HeartKids, Twitter @HeartKidsAust and Instagram @heartkids There are always lots of opportunities for you to engage with our special HeartKids community - for the latest information on upcoming events please check page 3 and 4 of our magazine and the Events Calendar on our website www. Sweetheart Day is our biggest opportunity to raise much-needed awareness about HeartKids and Childhood Heart Disease. We invite you to participate and join us to increase awareness about HeartKids. Please check page 4 of our magazine for the many ways you can be involved. Since this is the last edition of the printed magazine, it is important that we have your current email address for future correspondence. Please email us on

Youth Christmas Social

This year’s Youth Christmas social was a cupcake decorating class at Bake Boss. We held two sessions for young people aged 14-20 years on Saturday 10 December where they decorated Christmas themed cupcakes. Everyone had a great time, enjoying each other’s company, some laughs and demonstrating their artistic flair (not to mention eating some delicious cupcakes)!

A reminder that Privacy Laws prevent us from viewing the patient lists in hospitals. If you would like one of our team to visit you, please advise the ward clerk/nurse or contact us directly. We look forward to working with you in 2017. Best wishes Tracy, Sherrie, Rebecca and Helen

Support at MonashHeart

r Our Family Support Coordinato on ic clin the ts visi ld ona Sherrie McD pm 4.00 pm 1.00 ys Wednesda Medicine Monash Children’s Clinic, Special se) Hou ch ullo McC Centre (next to 246 Clayton Road, Clayton


Hospital Happenings Christmas in Hospital HeartKids helped to bring the Christmas spirit to those who were in hospital over Christmas. We provided Christmas decorations for Koala ward, put on a Christmas lunch on Thursday 22 December and distributed Christmas hampers to families on Koala ward and Rosella ward.

RCH Consumer Choice Award Much-loved cardiologist Bryn Jones took out this year's Consumer Choice Award, which recognises the favourite Royal Children's Hospital healthcare professional. Congratulations Bryn and thank you to everyone who voted.

Melbourne Cup Halloween HeartKids decorated the Koala ward for Halloween and provided Halloween treats for patients and families on Koala and Rosella ward.

Koala ward was decorated by HeartKids and we provided morning tea to celebrate Melbourne Cup day.

RCH Morning Teas


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

All ward, ICU and outpatient fam ilies are welcome to join us for mornin g tea, held on Tuesdays and Thursdays from 10:30am - 12:00pm in the Par ent Lounge on the 3rd Floor. We look forward to seeing you the re! 15

Reflections Hitting Heart Disease For 6 The months leading up to the game Our best mate Lachie was an avid sports involved many long nights and a lot fan and participant. We couldn’t believe of stress, however throughout the it when we found out that he had a whole experience we were completely heart condition. We have been friends astonished by the generosity of the since kindergarten; playing soccer, public. Every day we were getting cricket and basketball all through school phone calls from all types of people, and spending most of our spare time just wondering what they could do to together at the cricket nets or down at help out, whether it was donating $7000 the soccer club. We had just been away worth of sound equipment, donating on our school Ski Trip and Lachie wasn’t drink bottles and items for the raffle and well which led to his hospitalisation auction or flipping hamburgers on the in Melbourne at The Royal Children’s Organisers Marcus and Adam with barbeque. People just wanted to help Hospital where it was discovered that Australian and Tasmania Cricketers and be part of it all. he had a heart condition, Pulmonary ready for the match Hypertension, and would require Sadly, on 2 February 2016, we lost Marcus Smith, Ben Hilfenhaus, Tom Triffit, surgeries and at some stage, a transplant. our best mate. He never made it to Luke Butterworth, Xavier Doherty, Adam transplant or to his cricket match, When we heard of his condition we Jago and Julie Hunter however the night went ahead. On 9 wanted to create an event that helped March the Devonport Cricket Oval was buzzing with crowds of raise funds to aid his treatment whilst incorporating his huge over 1200 who came to support and remember this awesome love of sport. The idea started as a charity cricket match with guy, Lachie. It was the only night that week where the weather the aim to create an experience that would give Lachie the was fine and the sun shone, creating a wonderful evening and chance to play with some of his idols, being a night he would spectacular sunset. never forget. Through the help of some local identities in the Devonport community and Tasmanian Cricket Association, we Overall the event was a massive success with Lachie’s XI winning were able to attract internationally renowned cricketers such as by three runs and $16,000 being raised. To this date $10,000 of Ben Hilfenhaus, Xavier Doherty, Tom Triffitt, Luke Butterworth this has been donated to various charities such as HeartKids, and Julie Hunter as well as many big name sponsors. Ronald McDonald House Hobart and Tim Blair Run for Kids Foundation. The other $6000 will be distributed to various Our Devonport Community really gets behind its families to community organisations over the coming months so be sure support and help out. Unfortunately the Berwick family is no to like our Facebook page ‘Hitting Heart Disease For 6’ for all stranger to this support. Lachie’s twin sister Phoebe is a cancer updates about our donations. survivor and back in 2010 when she was receiving treatment, local identity Tim Blair started doing long distance runs around We wanted to create a night to remember for the Berwick Tasmania to raise funds for Phoebe. Since then he has helped Family. We hope the night and everything that has resulted from many other local families who find themselves with a childhood it, is everything you had imagined it would have been and we cancer diagnosis. These runs culminated in the formation of hope you believe we have done Lachlan proud. the Tim Blair Run for Kids Foundation and Tim helped us out Adam Jago & Marcus Smith immensely in our planning and organisation of the cricket Main Organisers of Hitting Heart Disease for 6 match.

Lachies’s XI Team Photo

Bez’s Allstars Team Photo


Berwick family with the players

HeartKids Support Manager, Tracy Stanley receiving the donation from Phoebe and Sarah Berwick

Reflections In Loving Memory of Lachlan Berwick 12.12.98 – 2.2.2016 Lachie was an amazing person who was kind and considerate, loving and gentle and an all-round nice guy who would do anything for anyone. He was the amazing and loved son of Sarah and Leigh, fun loving brother and brother in law of Mitch and Annika and twin brother and soul mate of Phoebe. He was an amazing grandson, nephew, cousin and best mate. He gave until the very end when he became an Organ Donor.

His proudest moment and something he was most looking forward to was to attend and celebrate his Graduation with his partner Phebe and all of his mates in 2015. He was in hospital leading up to this and managed to be well enough to fly home that afternoon to attend. He had the most enjoyable evening and loved seeing everyone again after some months. Lachie made the most of everything he did and his mates will ensure that his memory and legacy will live on throughout each and every soccer and cricket season.

A true gentleman who was taken way too soon. Love you always & miss you forever xxx

Thinking of You

Our thoughts and prayers are with the families and friends of all Heart Angels.

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

Birth Dates Michael Harvey Paul Livingstone Samuel Martin Amy Salas Benjamin Jones Lachie Berwick Blake Williams Jaime Ekberg Kristiana Thomaidis James Kelleher Lucas Stone Caesar Baker Jonathan McGrath Olivia Leishman-Nasserallah Ethan Hanley Ethan Caruana Angus Puszkar Heidi Hansen Blake Gordon-Cooke Amy Dawson Hope West Andrew Lillis Eve Higgins Levi McCormack Phoebe Rolando Max Barker Stephen Buckman

1 December 1996 2 December 1981 3 December 1995 11 December 1973 11 December 2010 12 December 1998 12 December 2014 19 December 2005 20 December 2004 21 December 1991 23 December 2009 27 December 2015 29 December 2007 2 January 2013 16 January 2002 17 January 2003 25 January 2013 30 January 2007 4 February 2012 11 February 2010 12 February 2013 13 February 2004 15 February 2013 17 February 2004 20 February 2009 21 February 2008 26 February 1991

Anniversary Dates

Jesse Cotter

1 December 2008

Michael Harvey

1 December 1996

Audrey Ebbage

15 December 2014 17 December 2013

Coco Du Chateau

Jackson Walsh

28 December 2009

Frank Desensi

29 December 2009

Oscar Batrouney

30 December 2009

Arlo Donnelly

30 December 2012

Amy Salas

6 January 2011

Lucy Salas

15 January 2011

Matthew Moran

15 January 2005

Angus Puszkar

25 January 2013

Daniel Kabrovski

26 January 2013

Heidi Hansen

30 January 2007

Lucas Stone

31 January 2010

Lachie Berwick

2 February 2016

Olivia Leishman-Nasserallah

3 February 2013

Ethan Caruana

14 February 2003

Levi McCormack

14 February 2014

Georgia Morrison

17 February 2000

Andrew Lillis

19 February 2004

Mary O'Keefe

22 February 2006

Kristiana Thomaidis

28 February 2009


Heartfelt Thanks... Final Field Cox Plate Luncheon In October HeartKids was honoured to be the Charity for the Final Field Cox Plate Luncheon held at the MCG. It was another action packed event, the seventh Final Field has held for the Cox Plate. This year's event celebrated Saintly’s amazing win 20 years ago, as well as giving the lowdown on the race from industry experts including G1X’s Mick Sharkie. Joining in the Saintly celebrations was Joe Agresta, Bart Cummings’ main track work rider for over 20 years. Having ridden Saintly in all his track work, as well as many other champion racehorses, Joe was able to tell some great tales. Final Field Ambassadors Chris Symons and Malcolm ‘Miracle’ Johnston were also back and provided lots of laughs, and so much more. The function also included auctions, a Calcutta and various raffles and opportunities to donate to HeartKids…all of which raised almost $15,000 on the day. A very special thank you goes to Adam Palmer, Tai Ryan and all the team and supporters of Final Field.

Simple Pleasures Simple Pleasures was born out of the desire to provide financial assistance to charities and provide them with the ability to offer support to families who have children with conditions that see them have long stays in hospital. Simple Pleasures runs a brunch annually to provide much needed funds to run our bi-weekly morning teas for families of heart children at The Royal Children’s Hospital. This year the Simple Pleasures Brunch took place on Friday 18 November at the Botanical in South Yarra. The event was very successful with 83 women in attendance and raising just over $7000. Russell Cambridge, in his inimitable style, made sure that everybody was entertained. We would like to thank Leon and Jackie Cook for attending and special thanks to Leon for sharing his personal and inspiring story. A big Thank You to the “Simple Pleasures Group” of Nikki Cambridge, Luisa Kenos, Melissa Karatjas and Trish Payne for once again putting on a thoroughly enjoyable event for all the women who attended.


...for Your Support Broadmeadows Car & Bike Show For the 11th year Adam and Luisa Michielin, together with their small and passionate army of volunteers, sponsors and suppliers, held their annual Car and Bike Show at Penola College in Broadmeadows raising funds for HeartKids. The array of amazing hotted up, pimped up, polished up and just plain loved, cars and motor bikes is truly astounding. At the end of the day Awards in various categories were presented, recognising the fantastic efforts people had put into their cars and bikes. The Awards were not only great fun but also genuinely appreciated by all. With this year’s fundraising Adam and Luisa have now raised over $100,000 for HeartKids…..what an amazing and selfless effort by them and their team….HeartKids cannot thank them enough.

Off the Cuff Luncheon In November we were again extraordinarily fortunate to have a fantastic speaker join us at our lunch to share their personal story. On this occasion it was none other than Actor (both television and movies), Author, and Stage Performer….not to mention HeartKids Sweetheart Day Ambassador….Shane Jacobson. Shane took the guests on a journey about his early childhood influences, in particular his father and uncle who helped shape much of his comic outlook. He talked about life when trying to make it as a stand-up comedian and singer, and of course the quintessential story of the Aussie battler in the movie 'Kenny'. Of specific interest was why Kenny was given his now famous lisp. Shane explained it was designed to make Kenny, who physically is large man, less imposing and more “loveable”, which it most definitely achieved….everybody loves Kenny. Paul Lunardi again sponsored the HeartKids Parents table and we cannot thank him enough. It means a great deal to them. Without the support of our Principal Sponsor, Jet Couriers, these networking lunches would not happen. So to Brett, John and the team, your support is genuinely amazing.

The Sunday Age City2Sea The Sunday Age City2Sea was held on Sunday 20 November in perfect weather conditions. Almost 10,000 entrants participated, running in either the 15km or 5km course from the MCG to St Kilda's Catani Gardens. We'd like to thank everyone who ran for HeartKids especially Team Asha who raised $1616.75 in memory of Asha McNamara.


A Commitment... Renfrew Christmas Lights Ron and Kath Renfrew decorate their home in Davey Street, Cobram, every year for Christmas and take donations for HeartKids. We thank Ron & Kath for their ongoing support.

Mrs Australia Globe Mrs Globe is the largest international pageant in the world for women aged over 25, who are married or are parents. Mrs Globe is both a celebration of beauty and culture, as well a charitable organisation. They held their annual event at the stunning Deakin Edge at Federation Square. It was an array of style and glamour which started with a red carpet and was followed by a cocktail party. HeartKids mum Samantha McGowan was the guest speaker. Her heartfelt speech gave guests an insight into how HeartKids supported their family through their journey with CHD. We would like to thank Kylie Tsiafogiannis from Mrs Globe and the entrants for their great fundraising efforts raising $6497 for HeartKids. We are very grateful that HeartKids was selected to be one of their chosen charities.

Aiden's Heart Awareness Family Fun Day On Sunday 6 November Aiden's Heart Awareness Family Fun Day held it's third annual event for HeartKids in Warragul. My son Aiden is the reason we hold this event. At 11 weeks of age he was diagnosed with a severe heart condition, Dilated Cardiomyopathy (DCM). He was in heart failure and given only a 1% chance of surviving. Now 11 years old, Aiden is currently winning the fight against his heart condition. HeartKids has given us a lot of support over the years & this is just a little way to say thank you. The event was made up of a market type atmosphere with over 60 stalls including local businesses, party plan & market stalls. We also had our first car display with several Variety Bash cars, along with many local vintage & classic cars which came to show their support. Our People's Choice award was given to a beautiful man named Graham Springer. Other activities included a local baseball club coming to have a


hit with the kids; a superstar performance from Australia's Got Talent 2016 rock band "Sister's Doll"; a visit from Australian Paralympian Gold medalist Jayden Warn; and from AFL football players Jed Lamb & Harry McKay (Carlton Football Club) & Ben McKay (North Melbourne Football Club) who spent their day playing kick to kick with the kids or posing for photos. We can't thank such an amazing group enough for all their support. We also have many local businesses to thank for participating. An extra big Thank You goes out to our major sponsor Vic Solar & Gas, also to Vin Rowe Farm Machinery, Quality Site welding & Baw Baw Old Engine & Auto Club for your very generous donations. This year we raised a total of $7,454.85 and have now contributed just over $12,000 to HeartKids. We look forward to an even bigger & better event in 2017. We welcome new volunteers both on the day and on the organising committee so if you are interested in helping please contact me on 0419 509 207. Any help is greatly appreciated. ~Lisa Giblin Making a Difference Volunteers As we look back over the last year, we consider how lucky we have been to have had the assistance of so many volunteers. We thank you all and truly appreciate your help. We hope you have had an enjoyable Christmas and best wishes for this New Year. Please go to the website to see more volunteer opportunities Cox Plate luncheon Thank you to Tammy, Bev and Chad for their help at the Cox Plate luncheon.

Christmas hampers IAG staff members were busy making up gift bags for our parents who had children staying on Koala or Rosella Ward at The Royal Children’s Hospital over Christmas. We thank IAG for their support and also thank Terese for coordinating the hamper packing.

Christmas Party gift packing This team of volunteers packed gift bags for our children aged under 3 years attending The Christmas Party for Special Children. We thank them for donating their time on the day before the party.

Christmas Party for Special Children Our marquee was manned by these volunteers who helped sell raffle tickets, gave out twisties and our gift bags for children Under 3. They also received many generous donations for the Christmas Hampers which we distribute to families in The Royal Children's Hospital at Christmas. Thank you to all those who helped.

Deloitte volunteers Two Deloitte staff members participated in Deloitte’s “Impact Day” by volunteering in our office. They were an asset to us and helped us in numerous administrative tasks.

IKEA volunteers Lots of visitors to IKEA Springvale lined up for face painting and finger nail painting (thanks to our volunteers) and balloon sculptures (courtesy of Marco the Magician) for a gold coin donation. We thank IKEA Springvale for offering us the opportunity to have our face painting and finger nail painting stall again.

Gift Wrapping at Broadmeadows Shopping Centre What a wonderful team of gift wrappers we had at the Broadmeadows gift wrapping stall held in December leading up to Christmas. They worked so hard to gather lots of gold coins for HeartKids from customers who had their gifts wrapped. We thank the staff at Broadmeadows Shopping Centre, particularly Ilhan, for offering HeartKids this fundraising activity. We appreciated the friendliness of the staff and their help during the fundraiser.


Thank you for your recent gifts... Ample CafĂŠ and Bar

Carvana, Ivan

Malua Racing Team Corstens

Aiden's Heart Awareness Family Fun Day

Dingley International Hotel

Myer Fountain Gate

Harley Owners Group/OZ HOG

North Melbourne Football Club

Hitting Heart Disease For 6

Signature Commercial

Izon, Sam

Team Asha

Kealba Hotel

Thermo Fisher Scientific

Love Your Sister

Z Transport Group

Arnold, Meagan Australian Centre Baker, Kate Broadmeadows Car & Bike Show

Financial and in-kind contributions over $500 are acknowledged in this column.

Poppy's Day at the Races

wonderful team at Heart child Poppy is a massive horse racing fun and thanks to the a day they will never enjoyed Matt father her and Malua Racing Team Corstens, Poppy Day. Stakes forget attending Emirates Rock for the day. Trainer Troy Corstens invited them to be part owners of Awesome the Emirates Stakes. won Rock me They enjoyed the thrill of Group 1 racing when Aweso s Racing for giving We'd like to send a massive thank you to the team at Malua Corsten Poppy and Matt such a great experience.

Kensington Market & Scott It was a fantastic day at the Kensington Market sponsored by Biggin ds of people thousan and shining was sun The Kensington on Sunday 18 December. as Christm their finish and year the for market last came down to celebrate the and holders stall Market ton Kensing the from ns donatio us genero shopping. With the for $535 raised ton great help from the HeartKids volunteers, Biggin & Scott Kensing HeartKids in an amazing raffle and donations. d in an article in One of the cutest visitors was young heart child William who feature per article). newspa with (photo market the of day the the Sunday Herald Sun on ids and the HeartK of work Biggin and Scott Kensington are proud to support the . Market ton community spirit achieved through the Kensing


Sponsors and Supporters Victorian Partners:


National Supporters:


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Diary Date&sa Heartbeat

Virtual Two Feet 1 Dec to 28 Feb mp  National Teen Ca  Fri 20 to Mon 23 Jan 2017 o Zo e rn Melbou et Series Run #1, Wed 1 Feb - Suns , Launceston  ow Sh ke  Sunday 5 February - Car & Bi - Sweetheart Day  day 14 February y Harley Ride  Tues Da rt ea th ee Sw Sat 18 February at Torquay  uary - Paragliding  Saturday 25 Febr oup Meeting Gr rs re Ca an nt - Fo Sun 26 February   Saturday 1 April - Run The Rock nic Pic n ow Shepparton KidsT  Sunday 2 April s Kid e th r fo n  Sunday 9 April - The Ru y Appeal  April - Good Frida  Friday 14 ril - Makayla Cook's Charity Golf Day Friday 14 Ap s Fun Day  an Lord HeartKid  Sunday 23 April - Al s ion at loc us amatazz, vario 24-29 April - Razz 1990's Families   Sat 20 May - Catch Up Lunch for y 17 - Super Boss Da  Friday 26 May 20 eck inside or go

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MELBOURNE METRO BRANCHES Bundoora Jessica Shakespeare 0409 165 004 East Bentleigh Maggie Stavrou (03) 9563 7133 East Brunswick Marnie Ceballos 0433 342 716 Eastern Suburbs Yolanda Care 0433 136 326 Frankston/Peninsula Maxine Selzer 0421 561 958 Melton Lauren Tyrrell 0424 594 757 Pakenham Joanne Arrowsmith (03) 5967 7083 Point Cook Jonathan Mackley 0411 114 008 Tullamarine Paige Donnelly 0424 239 964 REGIONAL BRANCHES VICTORIA Albury/Wodonga Cathie Kelly 0417 049 341 Ballarat Rohini Dobell & Alan Smith 0407 851 648

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HeartKids Ltd Victoria/Tasmania Division CONTACT US PO Box 803 Parkville Victoria 3052 P: (03) 9329 0446 E: Facebook @HeartKids Twitter @HeartKidsAust Instagram @heartkids

Contact Details Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 Clare Fountain 0418 140 347 Nadine Daly 0413 710 342 Cobram Bianca Quinane 0419 674 408 Echuca/Moama Tracey Hard 0438 962 056 Geelong Libby Gibson (03) 5250 2439 0411 057 905 Horsham Gaynor Baker 0407 504 538 Kyneton/Woodend Amy Crosbie 0411 552 264 Mildura Caitlin Andrews 0412 447 269 Portland Kerry Sluggett (03) 5523 2503 0418 312 320 Shepparton Cheryl Alexander (03) 5825 4005 Stawell Leanne Amarant 0419 864 412 Wangaratta Lisa Dekeling 0421 655 636 & Shane Hack 0488 221 184

Wonthaggi Erin Howell 0431 702 863 TASMANIA Burnie/Devonport Claire Gluyas 0408 351 661 Hobart Kaye Nugent 0410 410 440 Paul Hyland (03) 6247 8435 0418 561 504 Launceston Kylie Smith (03) 6393 6240 0448 983 587 Steven Wright 0407 908 674 SPECIAL INTEREST GROUPS 22q11 The VCFS and 22q11 Foundation Maria Kamper BEREAVED FAMILIES SUPPORT CHD Child Loss AUSTRALIA Facebook group BRUGADA SYNDROME Pavlina McMaster 0438 233 414 CARDIOMYOPATHY ASSN of AUST. Website: DOWN SYNDROME Sam Jackson 0439 360 035 EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110

VISIT US Suite 33 204 – 218 Dryburgh Street North Melbourne 3051

hearts4heart - Support for Adults with Heart Disease Tanya Hall 0426 240 636 HYPOPLASTIC LEFT HEART SYNDROME & SIMILAR CONDITIONS Leanne Amarant (Victoria) (03) 5358 2945 Csaba Ovari (Tasmania) (03) 6229 8169 KABUKI SYNDROME Stacey McKiernan (03) 5275 1542 Website: KAWASAKI DISEASE Shirley Mates (03) 9894 1257 Website: LONG QT SYNDROME (LQTS) Sherrie McDonald 0431 544 510 or MULTIPLE BIRTHS April Schubert 0407 551 967 (02) 6056 6448 MUSLIM FAMILIES Lucy (Fatima) Hussain 0430 738 820 OVER 18’s Erin Cervelli (03) 9513 9030 PACEMAKERS Mandy Tichelaar (03) 9728 6984

2016 2017 summer heartkids victoria tasmania magazine  

Magazine for Families and Friends of HeartKids in Victoria-Tasmania

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