2015 2016 summer heartkids victoria tasmania magazine

Summer 2015-2016

Quarterly Magazine for Victoria and Tasmania

* Christmas Celebrations * Tween Camp *

Volume 25 Issue 4

The Blocktagon

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awareness

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research

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advocacy

Matters of the Heart -

Our Team

Chief Executive Officer

HeartKids Vic Inc Board 2015-2016

2016 is shaping up to be another exciting and busy year for HeartKids in both Victoria and Tasmania.

As we enter the New Year and leave 2015 behind it would be remiss not to thank all those who donated towards our Christmas Hampers distributed to families at The Royal Children’s Hospital, and the IAG volunteers who gave up their time to help pack them. A particular thank you to Rick and his team at Signature Commercial who sponsored this year’s hampers and Jet Couriers who generously provided a van and driver to transport them to the RCH on Christmas Eve. As I write this article HeartKids staff and volunteers across the country are gearing up for a very busy Awareness Month featuring Sweetheart Day in February. This year’s Campaign has Shane Jacobson as its Ambassador and will feature prominently throughout the media in both January and February. So look out for it and if you would like to get involved, please do not hesitate to call the HeartKids office.

Our second major campaign for 2016 is Super Boss Day on 4 March and this year it’s going to be a national event. We are thrilled at the popularity this is gaining … and why not, it is a lot of fun for all those who participate.

Take the time to visit www.sweetheartday.org.au and www.superbossday. org.au for more information on both these exciting campaigns.

Whilst these types of activities certainly bring awareness to HeartKids, as well as vital funds....it is our community and member based fundraising activities that not only continue to amaze us but are in so many ways the foundation of our funding for family support. We cannot thank you enough.

Whilst mentioning family support I think it appropriate that we touch briefly on some of the numbers that reflect on our work in 2015 and in doing so, acknowledge our team headed up by Tracy Stanley:

• Over 2000 families supported

• 3440 Hospital visits were undertaken

• 2342 attended our morning teas at the RCH Whilst only a snapshot of the broad nature of what HeartKids does, it is none the less an insight into the lives touched.

And lastly…..many would have read that our Chair for the last few years Phil Riggio stepped down late last year. On behalf of the staff we wish Phil all the very best in the future and acknowledge the valued contribution and support he provided.

Warm regards Norm Norm Hutton CEO HeartKids Victoria/Tasmania

* Chairperson: Tania Tytherleigh * Vice Chairperson: Paul Lunardi * Treasurer: Anthony Flapper * Secretary: Robert Cugno * General Board Members: Erin Cervelli Jonathan Mackley David Cervelli

HeartKids Vic Inc Employees * Chief Executive Officer Norm Hutton 0409 874 452

norm.hutton@heartkids.org.au * Support Manager Tracy Stanley 0478 091 773 tracy.stanley@heartkids.org.au * Family Support Coordinator

Sherrie McDonald

0431 544 510 sherrie.mcdonald@heartkids.org.au * Youth Support Coordinator

Rebecca Peters rebecca.peters@heartkids.org.au * Casual Family Support Coordinator

Helen West helen.west@heartkids.org.au * Member Activities Coordinator

Lynette McCoullough lynette.mccoullough@heartkids.org.au * Membership/Magazine Coordinator

Margaret Patullo margaret.patullo@heartkids.org.au * Development Manager

Sandra Zlatanovski sandra.zlatanovski@heartkids.org.au * Operations Manager

Jason Alabakis accounts.victas@heartkids.org.au * Corporate Relationship Coordinator

Luisa Kenos luisa.kenos@heartkids.org.au * Fundraiser & Events Coordinator

Pruedonce Bainbridge

fundraising.victas@heartkids.org.au * Magazine heartkids@heartkids.org.au

HeartKids Vic Inc proudly supports 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.

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and Front cover: The Blocktagon contestants Luke and Ebony with Russell Andrew from Biggin & Scott Photo courtesy of Impress Photography Thanks to all who sent photos and information for this edition.

Contributions are always welcome - send to: heartkids@heartkids.org.au s.

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

Permission to reprint any of the personal stories in this magazine is required with an from the author or the Chairperson. Any other articles may be reprinted acknowledgement to HeartKids Vic Inc. Please note that articles published in this magazine do not imply and may not reflect overall views of HeartKids Vic Inc.

endorsement

Also note that the opinions expressed in child stories represent personal the experiences and that medical details are specific to each case. Although Parents conditions may appear similar to your child’s, other details may differ. cardiologist. requiring more specific information should check with their child’s

Coming Events People’s Choice Community Lottery Help support us in the People’s Choice Community Lottery - we keep 100% of all proceeds and you get the chance to win from a massive prize pool! Ticket sales open in February, full details will be on our website soon.

Audrey’s Market Day, Friday 12 February For more details see our Events Calendar: http://heartkidsvictas.org. au/events

HeartKids Outback Adventure, 1-5 March Please refer to our Events Calendar: http://heartkidsvictas.org.au/ events

The Run for the Kids, Sunday 20 March Please see http://www.runforthekids.com.au/

Good Friday Appeal, Friday 25 March For details see the website: https://www.goodfridayappeal.com.au/

Makayla Cook's Charity Golf Day Date & Venue: Friday 25 March, 2016 Drouin Golf and Country Club Assemble at 9:00am, shot gun start 10:00am Three person Ambrose event. $120 for a team of three includes: • Entry fee • 7 prize holes (4x nearest to pin, 2x longest drives, 1x pro shot) • Auction, raffle and live music to follow presentations • BBQ sausage sizzle, vegie burgers & drinks for purchase on course • Lots of prizes to be won!!!

This year there will be a handicapped and non-handicapped event.

All players must have a current handicap to play in the handicapped event.

Contact Jackie Cook 0488 201 200 or jachowi@hotmail.com for further details or to request an entry form!

Biggin and Scott Trivia Night – April TBC For more details see our Events Calendar: http://heartkidsvictas.org. au/events

HeartKids/Final Field Golf Day April TBC Join HeartKids and one of our major supporters, Final Field, for our annual HeartKids Golf Day. Individual players, teams of four and corporate sponsorship available.

Full details available on our website soon.

Myuna Farm Outing Date & Time: Sunday 3rd April 2016, 10am – 2pm Venue: Myuna Farm, 182 Kidds Road, Doveton.

The Kiwanis Club of Sunbury is kindly sponsoring a fun day out at Myuna Farm and your family is invited to attend.

Entry to the farm is by gold coin donation per family.

Your family will receive a free ticket for a train and pony ride and you will be able to visit the animals on the farm including the baby nursery. A free sausage sizzle lunch will be provided and will give families an opportunity to meet while eating lunch together. You may also bring your own lunch and snacks if you prefer.

This event is for immediate family only as places are very limited and we aim to accommodate as many families as possible.

Please register your family via www.trybooking.com/KDDA For further information or cancellations, contact Lynette McCoullough on lynette.mccoullough@heartkids.org.au or 0418 548 879.

In This Issue

3-4 Coming Events 4 HeartKids Awareness Month 4 Super Boss Day 5 HeartKids at the Blocktagon 6-7 Families Enjoy Christmas Celebrations 8-9 Xavier's Courageous Battle 10-11 Members Participate in Amazing Activities 12 Branch and Tasmania News 13 Congratulations! Heart Child News 14 RCH Transition Support Service 15 Hospital Happenings 16 Support Team News 17 Reflections 18-19 Heartfelt Thanks for Your Support 20-21 A Committment to Making a Difference 22 Donation Acknowledgements 23 Sponsors and Supporters 24 Contact Details and Diary Dates

Razzamatazz Show Register interest for free tickets to one of these shows: • Door of Hope, Launceston – Mon 18 April •D evonport Entertainment and Convention Centre – Tues 19 April • Burnie Arts and Function Centre – Wed 20 April • Melbourne Convention Centre – Sat 23 April Times to be advised. You will receive an email when this information is available. Please register your interest via www.trybooking.com/KDFP For more details about the show: http://razzamatazzshow.com.au/

Steam Locomotive Society Day Thanks to the Moorabbin Kiwanis Club, the Steam Locomotive Society of Victoria (SLSV) has offered a date for HeartKids families to visit and ride some of their Locomotives free of charge.

Date/Times: Sunday 15th May. Venue will be open from 9.30am. Trains will run between 10.30am - 11.30am, then Moorabbin Kiwanis will provide a sausage sizzle lunch.

Venue: 128 Rowans Road, Moorabbin; at the southern end of the G.R. Bricker Reserve on Rowans Road, Moorabbin.

Booking: Express interest on www.trybooking.com/KEJR Families should bring their own picnic if there are any special dietary requirements.

All persons riding the trains must wear closed-in footwear.

No thongs, sandals or crocs.

More details on the SLSV website: www.slsv.com.au

Coming Events continued on page 4

For more information, check Facebook and our website Events Calendar: http://heartkidsvictas.org.au/events

HeartKids Awareness Month February is Childhood Heart Disease Awareness Month and we are seeking your help to raise much-needed awareness in the wider community.

Awareness Month Photo Challenge We are hosting an Awareness Month Photo Challenge – take the challenge every day and share your creativity while helping to raise awareness about CHD. Please hashtag your photos #HKAwarenessPhoto so we can share them! Tell your friends and family about the challenge and encourage them to participate!

Faces of CHD for Awareness Month During the month of February we will be featuring heart children, heart angels, heart teens and adults on social media and our website. If you would like to participate, please send a photo and a paragraph about your CHD journey to tracy. stanley@heartkids.org.au

Be a Sweetheart this Valentine’s Day Sweetheart Day, held annually on Valentine’s Day, raises much-needed funds to provide support for children and families affected by childhood heart disease as well as fund vital medical research. So show your heart this February 14 to join the fight against childhood heart disease!

To support Sweetheart Day you can: • Host an event at work with colleagues (or at home with family and friends) and have a fun-filled day getting together sharing a cuppa and cakes, or even playing games – check out our fundraising page to help you make your event memorable!

• Show your support by wearing a splash of red and get your family and friends to sponsor your event by donating whatever they can to help fight childhood heart disease!

• You can promote and sell awesome HeartKids merchandise to your fellow colleagues • Bring Valentine's Day themed cakes and sweets to share with your friends • You could even send a personalised Valentine’s card to your Valentine via the website • Volunteer for planned Sweetheart Day events at shopping centres and train stations (see volunteer information below) For some inspiring Sweetheart Day fundraising ideas and to register your interest please visit https://www.sweetheartday. org.au/

Volunteer for HeartKids this Sweetheart Day We need lots of volunteers to spread the word about HeartKids and raise funds on Thursday 11 to Saturday 13 February. 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.

Please express your interest via www.trybooking.com/JLCE For enquiries, please contact Lynette McCoullough, Volunteer Coordinator on lynette.mccoullough@heartkids.org.au or 0418 548 879.

Super Boss Day, Friday 4 March Following on from the success of last year’s inaugural Super Boss Day campaign, this year’s event is bigger and better and now national!

Super Boss Day is a fun initiative where bosses or co-workers dress as a superhero for a day to raise funds for HeartKids to support children with heart disease and their families. Bosses can register themselves or be nominated by staff, friends or family. By raising funds, you get to dress up as your favourite superhero on Super Boss Day on Friday March 4 2016!

It’s a lot of fun, a great way to involve your staff and colleagues and at the same time raise funds for HeartKids Victoria/ Tasmania.

How? With the help of some tights, a mask and a fetching cape, we’re challenging bosses to channel their inner superhero and transform themselves into a champion for HeartKids Victoria/ Tasmania. Come to work dressed as Superman, Wonder Woman, Catwoman or Indiana Jones.

For further information please visit http://www.superbossday. org.au and follow Super Boss Day on Facebook and Instagram.

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HeartKids BJJ Superhero Throwdown, 5 March 2016 11:00am at Northcote Indoor Sports Centre Who would win if Batman vs. Superman? Catwoman vs.

Wonderwoman? The Thing vs The Hulk? You might know the stories back to front but you’ve never seen them show down like this before. This March some of the best local fighters will represent some of the biggest superheroes in the ring and settle once and for all, who really is the toughest, meanest and greatest of them all!

This family friendly show will highlight the skills of local Jiu Jitsu and Kung Fu practitioners while raising funds and awareness for HeartKids Victoria.

Booking/donations: http://www.trybooking.com/175219 Please also like, follow and share the event: https://www.facebook.com/events/1535068210139904/

Super Boss Extreme, Sunday 6 March 2016 Take your BOSSNESS to new extremes, give yourself the ultimate adrenalin rush, whilst supporting HeartKids Victoria/ Tasmania! On March 6 2016 HeartKids Victoria/Tasmania is planning to have our very own dedicated Super Boss Extreme Team jumping out of a plane at 14,000 feet over the picturesque St Kilda Beach. There are limited jumps available and you will need to use your Super Boss Powers to raise a minimum of $1,000 for our precious heart children to secure your spot.

So what are you waiting for?? Beat your fears, push your boundaries, step outside your comfort zone & fundraise to help children and families affected by childhood heart disease. We guarantee that once you’ve taken the plunge you'll feel like you can achieve anything!

For further information contact Pruedonce Bainbridge on fundraising.victas@heartkids.org.au

HeartKids at The Blocktagon Our wonderful supporters, Biggin and Scott Real Estate, were once again involved with The Block, representing Luke and Ebony in ‘The Blocktagon’ series.

Some of our heart children were lucky to attend a superhero themed birthday party in Luke & Ebony’s apartment celebrating the 9th birthday of heart child Brodie and his twin brother Mason.

Our little guests were entertained by Spiderman with games, face-painting and balloon art, enjoyed delicious food and an amazing superhero birthday cake from The Cake Angels. Thank you so much to Luke and Ebony for hosting the party, showing our families through your apartment and being so generous with your time. Special thanks to Biggin & Scott Richmond, The Cake Angels and Real Estate Career Developers for helping to make the party a huge hit.

We had a marquee at the Open for Inspection on 8 November with awesome nail art by I Scream Nails and delicious cupcakes and cookies from The Cake Angels. The huge crowds enjoyed stopping by to visit our marquee and we had lots of fun when Luke and Ebony visited. It was a great opportunity to raise awareness and funds for HeartKids. Thank you very much The Cake Angels and I Scream Nails for your support and help making the day a success.

The auction was nerve-wracking with a painfully slow start but auctioneer extraordinaire Andrew Crotty held his nerve and secured a fantastic price for Luke & Ebony’s apartment.

HeartKids would like to thank Luke and Ebony and the Biggin & Scott Richmond team – Andrew, Russell, Claire and Michelle for involving us again.

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HeartKids Families...

Variety Christmas Party

Regional Christmas Parties

On Thursday 10 December 70 heart children enjoyed the annual Variety Christmas Party at the Melbourne Convention and Exhibition Centre. The Variety team and volunteers organise a fantastic event and we thank them for including HeartKids every year.

Geelong

Our Geelong branch held their Christmas party at All 4 Kids Play Centre. Attendees enjoyed fun activities including a disco room, Crazy golf, Target cross games, Inflatable ball games, Giant Connect 4, Giant Jenga, Giant Snakes & Ladders and a Bungee run.

Our sincere thanks to Big W for the presents and Sebastian Smith for his help on the night.

Bendigo The Bendigo Christmas BBQ was held on Sunday 29 November at White Hills Botanical Gardens.

Bendigo Kiwanis provided the BBQ lunch and guests enjoyed a visit from Santa. They celebrated their local Heart Angels, releasing balloons in their honour.

Hobart

Wodonga

Our Tasmanian families were treated to a fun day out at the Christmas Party for Special Children at the Derwent Centre in Hobart on 22nd November.

Sparky the clown and many celebrities excited the children on stage. Merry go-round, jumping castles and face painting plus many more activities created a fun environment. Santa welcomed the children from the stage and met the children at the toy room to offer them their presents.

A great day out for everybody!

Our families in the Albury/Wodonga and local areas were invited to a fun day out at the Christmas Party for Special Children at the Wodonga Sports and Leisure Centre.

Fun was had by all who attended as they watched Steve Bowen and local and national celebrities entertain the children on stage.

Santa was a highlight of course as he greeted children on stage and then met the children at the toy room to give them their presents.

Merry go-rounds, jumping castles, face painting and Kool Art were some of the many activities on offer for the day. Excited children went home with smiles on their faces!

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…enjoying Christmas Celebrations Melbourne Moonee Valley Racecourse was a busy hub of excitement on Sunday 13 December when a large crowd filled the racecourse for the traditional Christmas Party for Special Children.

HeartKids families made up a large number of the people who attended along with families from many other charities.

Our children and families enjoyed stage shows, carnival rides, jumping castles, face painting, caricatures, car and bike displays, Star Wars and Disney characters and much more. The Cake Angels' reindeer cake was truly a piece of art more like a sculpture than a cake! The children enjoyed visiting the Toy Room where they received a bag of presents to take home. The photos show the fun on the day.

For their contribution to this wonderful day out, we thank: • The team at the Christmas Party for Special Children • The Cake Angels who created the Reindeer cake • Little Tinkers • Pepsico • Volunteers: Lauren Trengove-Lizio, Karin Burgess, Deb Quilty, Margaret Patullo, Gordon Patullo, Anna Lau, Sherrie McDonald, Tracy Stanley, Kiana Stanley, the volunteer team from People's Choice Credit Union, Rigan Tytherleigh, Lynette McCoullough

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Xavier's Courageous Battle...

As we sat in the ultrasound waiting room in complete silence, placing bets on whether we were going to have a little boy or a little girl, I heard a sweet voice call out my last name. I walked anxiously into the small room with my partner and parents beside me. We were all anxiously waiting to hear the sex of the baby but little did we know that our worlds would collide and come spiralling down.

As minutes crept into hours and as sonographers walked in and out of the room, we knew things weren't right. While I held back tears, I kept asking what was wrong with my baby and then eventually the radiology manager walked into the room and said, 'Please don't panic, but you may need to go to Adelaide for further medical imaging. I'll hand these notes on to your gynaecologist whom you will need to speak to tomorrow'.

The next day seemed like months away. As the morning approached so did my appointment. Nothing could have ever prepared me for the words I was about to hear. 'Your baby has a heart condition - Tetralogy of Fallot to be exact'.

My heart sank, the room became a blur and my tears began to flow. I couldn't bear to listen to another word that she had to say.

I picked up my handbag and ran out of the room as fast as I could with tears flowing down my cheeks - I felt as if I was going to faint. My whole world had been turned upside down and this was only the beginning.

A week later I was flown to Adelaide where I would undergo ultrasounds with a cardiologist.

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Photo courtesy of Renee Brown

Photography

Dr Terry Robinson from the Woman's and Children's Hospital in Adelaide then confirmed that Xavier had Pulmonary Atresia with a Ventricular Septal Defect. He then did an amniocentesis to make sure that Xavier's chromosomes were in order and that he didn't have any other abnormalities.

As Adelaide couldn't do anything for Xavier surgically, I was then referred to Melbourne where I underwent more ultrasounds at the Royal Women's Hospital.

On the 28th of May 2014 at 10.51pm Xavier was born due to decreased fetal movement at 37 weeks. He weighed 6 pounds and 8 ounces.

He was extremely blue and required oxygen straight away and almost two hours after being born was transferred to The Royal Children’s Hospital where he was admitted to Intensive Care.

Over the next few days he had numerous echocardiograms, ECGs and x-rays and then finally a date for surgery was set after we met with his cardiac surgeon Christian Brizard and cardiologist Michael Cheung.

As Xavier was doing so well, he was allowed to come back to our accommodation to wait for surgery. On the 9th of July, Xavier had his first open heart surgery at 6 weeks old. Cody and I paced hallways waiting desperately for the phone call from Christian. Xavier was in theatre for a total of 8 hours and then he was moved to the Intensive Care Unit (ICU). He had a BT shunt inserted from his right pulmonary artery to his aorta.

Xavier had a very speedy recovery in ICU and once he got to the Koala Ward we waited for results from his CT scan which would determine if we could go home.

From the look on the face of Xavier's cardiologist I knew it wasn't good news. Xavier's pulmonary artery was narrowing which meant he needed to have them enlarged by either ballooning or directing the blood flow to the narrow area to increase growth.

At 8 weeks old, Xavier underwent his second open heart surgery which took five hours. Christian had redirected blood flow to Xavier's left pulmonary artery disconnecting the pulmonary arteries at the middle and adding a shunt from the left pulmonary artery to one of the branches coming off his aorta. This meant that Xavier now had two shunts.

Xavier's Courageous Battle... continued Just hours after Xavier returned to ICU following surgery his oxygen saturations started to drop and he became quite puffy so his ventilation was increased to 100%. ECMO would be considered if the ventilator couldn't help him any more. After numerous tests, Xavier tested positive for RSV (a respiratory infection of the lungs).

After 5 days of 100% ventilation they finally started to wean Xavier's ventilation. He no longer required the extra help as his little lungs were beginning to recover from the infection he had caught.

After being in ICU for seven days, Xavier was then transferred to the Koala Ward where he would wait for nurses to take out his chest drains and stitches and also wait for another CT scan.

Day 10 after his second surgery, we received the most amazing news. Xavier's scan had come back almost perfect and we could take our little boy home for the first time to our home town of Alice Springs which is located in the Northern Territory.

After being home for four months, we then flew back to Melbourne in November 2014 to await Xavier's third surgery.

As we attended pre admissions we were told by Xavier's cardiologist that he would receive his full repair, however after his surgeon saw Xavier's medical imaging, the plan changed.

This time Xavier would have both shunts upgraded to the next size or so we thought! As our surgery got pushed back by two weeks, Xavier went into theatre on the 17th of December. He was in theatre for nine and a half hours.

After answering Christian's phone call he proceeded to tell me that Xavier's operation was very successful and that once he had a good look at Xavier's heart, that his pulmonary arteries had grown enough to have half of his repair done, which meant that both shunts were taken out, his pulmonary arteries were joined back together and a conduit was placed from his pulmonary artery to his right ventricle.

The next step of Xavier's final repair would be the closure of his Ventricular Septal Defect (VSD).

Xavier had the most remarkable recovery in his third time around ICU for only 8 hours and then the ward for 8 days.

Xavier was discharged on Christmas Day. After flying home on New Year's Eve, we were scared to see what the new year had to offer us. I can say that Xavier hasn't had his final repair yet but we have watched him grow into the most beautiful, loving, caring, cheerful, playful and energetic 18 month old you would ever meet. He is an absolute blessing.

Our journey is far from over but although it was a long, crazy roller coaster ride of hospital admissions, surgeries, appointments and tests, it is worth every minute.

Xavier has taught myself, family and friends how important the little things in life are, and how to cherish every moment and memory.

We can not thank Xavier's cardiologist, Michael, and surgeon, Christian, and all of the staff at RCH enough for the numerous hours and level of care they have provided to our son. And also a big thank you to HeartKids for the ongoing support they give to our family.

We would be so very lost without the amazing people who volunteer their time to help families just like ours.

Written by Xavier's mum, Courtnay

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Our Members Participating…

Box Hill Miniature Train Day The weather was not kind to us on the day of this event, however it didn’t stop the families who attended enjoying the tasty lunch under cover.

Luckily the weather was okay by the time the miniature trains were ready to run so our children and parents were able to enjoy the fun of riding the trains around the lovely Box Hill Miniature Steam Railway gardens.

We thank the Kiwanis Club of Waverley, in particular the organiser, Brian Mates, and the Kiwanis volunteers who helped on the day, as well as Marco The Magician for entertaining the children during the wet weather.

Carn the Kids Thanks to LeasePlan and Melbourne Victory Football Club for giving the opportunity for our families to enjoy all the excitement the A-League has to offer at the Carn the Kids ‘Fun Day Out’ on Saturday 28 November at Etihad Stadium. Our families had a wonderful experience and enjoyed meeting some of the Melbourne Victory players, face painting, meal vouchers and show bags.

Carn the Kids is a program which gives children who might not otherwise have the opportunity a ‘fun day out’.

HeartKids appreciates the ongoing support of LeasePlan to enable our families to participate in this program.

FunFlight HeartKids was lucky to be one of the many charities invited to attend FunFlight, which was held on Sunday 8 November at various aero clubs in Victoria.

Funflight’s vision is “Every child can fly”. It is purely volunteer run and was established to provide children touched by adversity, with joy and inspiration through the exhilaration of flight. We had lots of excited children and parents on that day as they got their chance “to fly”. They were also treated to a tasty lunch which they could share with other parents and children from other charities.

Thanks to all the Aero club and FunFlight volunteers. In particular, thanks to FunFlight’s coordinator, Amy Emmett, for inviting HeartKids to be involved.

World Festival of Magic A number of our families gathered in the Plenary Hall of the Convention Centre in August along with families from other charities, to watch the amazing World Festival of Magic.

We thank the Lions Club of Melbourne Markets and local businesses for sponsoring this show.

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...in Amazing Activities Tween Camp Over the weekend 13-15 November nearly 30 heart children and some of their siblings made the trip to the lovely town of Kyneton for the HeartKids Tween Camp. This year the camp was held at PGL Campaspe Downs, which proved to be a perfect setting for a fun filled weekend meeting new friends and participating in activities.

The first night of camp was chaotic – everyone was bouncing around so happy to be reuniting with friends from last year, as well as meeting new people and exchanging stories. The next day was jam packed with activities from abseiling to rock climbing, to the giant swing and flying fox – everyone found something that they wanted to do. It was great watching the campers try new things and feel a sense of achievement when they were able to test their own limits! The fun continued into the evening when we hosted a trivia night. The campers were split into four teams and did very well in their attempts to prove that they were the smartest team on camp! They might have had a bit of help from the leaders – who sometimes instead of reading out the questions, gave away some of the answers by mistake!

On the final day of camp we tested the campers’ knowledge of the camp site by running a scavenger hunt before being joined by their families for a barbeque lunch.

The sun came out for the first time that weekend and allowed us to have lunch outside overlooking the lake. The campers were excited to see their families and retell their stories of camp, but also sad to say goodbye to their friends – new and old.

A big thanks to the staff at Campaspe Downs for all their help whilst we were there – a special shout out to John who made sure we were well looked after. Also to the volunteers on camp; Lauren Johnson (Camp Nurse), who did a fantastic job in making sure all the campers took their medications and Steve McLean (Camp Manager) and Janelle Haughton (Group Leader) for supporting and organising the kids. Also a special thanks to Chelsea Harding and Callum Werner who were our Camp Champions this year and provided assistance to the group leaders and guidance to their fellow younger heart children and Erin Cervelli for organising the camp and travelling on the bus to camp with the tweens.

Well done everyone for another successful camp and hopefully we see you next year!

Stephanie Kassimiotis Tween Camp Group Leader & HeartKids Victoria/Tasmania Volunteer

CATS the Musical Competition

Following its triumphant return to London's West End, the acclaimed revival of Andrew Lloyd Webber's legendary musical CATS, starring Delta Goodrem as Grizabella, had audiences purring with pleasure when it came to Melbourne in December and January.

Thanks to CATS we ran a “Name the Cat” competition with the prize of four A-reserve tickets to the show and an up-close tour of the fantastical set with a couple of the cast members after the show!

The winner of the competition was Virginia Devlin. Virginia's entry was selected as the

winner by entertainer Josh Piterman who features in CATS as Bustopher Jones / Gus / Growltiger.

Virginia's entry: 'Zipperella - A fantastic zipper shaped scar down my chest is evidence of my fight against an evil enemy. I am brave, proud and incredibly determined.'

The Devlin family thoroughly enjoyed the show and their meet and greet with some of the cast. We'd like to send a massive thank you to The Really Useful Group, CATS the Musical and Josh Piterman for providing this wonderful prize.

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Branch and Tasmania 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: http://heartkidsvictas.org.au/events/

Branch News Bunnings BBQ Volunteers are needed on Saturday 27 February from 8am 5pm, at Bunnings Waurn Ponds, 237 Colac Rd, Waurn Ponds.

If you are able to help, please contact Libby M: 0411 057 905 E: libway2000@yahoo.com

Tasmania Coming Events Aussie Coupes Car & Bike Show - 7 February Venue: Josef Chromy Wines, Relbia Road, Launceston, Tasmania The 6th annual Aussie Coupes Car & Bike show at Josef Chromy wines.

• Come and sit by the lake, have a glass of wine or beer, something to eat and relax listening to the live music!

• Loads of children’s entertainment - Jumping Castles, Face Painting, Temporary Tattoos, Pony Rides, Zorb Balls, have your photo taken with Elsa and a few other characters.

• Live Music by three awesome bands, local beer and wine, plenty of food and all those great cars and bikes to see.

Rotary Raffle Thank you to the Rotary Club of Highton for inviting us to be part of their community raffle again. We appreciate the support of the Branch Coordinators who helped sell tickets this year. We sold more tickets than ever raising over $4000 for HeartKids.

Geelong Disco

In the 2015 September school holidays our Geelong group, family and friends enjoyed a disco. DJ Mitch donated his services to the day, as did Brenda, taking beautiful photos of each family. Cassie and Jeanette did a wonderful job with the face painting and Victoria gave all the kids and some adults some crazy coloured hair for the day. Audrey helped out with the lucky dips kindly donated by Big W Geelong.

There were refreshments kindly donated by Hepburn Water and Beverages.

The day was a great success with all the families having a wonderful day. Thank you to all of my volunteers, I could not do it without you.

Libby Gibson Geelong Branch Coordinator

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Razzamatazz Show Register your interest for free tickets to one of these shows: • Door of Hope, Launceston – Mon 18th April 2016 • Devonport Entertainment & Convention Centre - Tues 19th • Burnie Arts and Function Centre – Wed 20th April 2016 Times are to be advised; you will receive an email when this information is available.

Register your interest via www.trybooking.com/KDFP See http://razzamatazzshow.com.au/ for more information about the show.

Heart Child News

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New Babies

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Adrian

 Congratulations and our very best wishes to all these families  who have welcomed new babies in recent months.   Ming and Shan Loh have welcomed their first born, HK Elliott on 14 April.

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Pheakkdey Kouy and Sam Ouen Buy are proud to announce the birth of HK Katherine, born 6 May. Little sister to Justin.

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Robert and Melissa Gregg are proud to announce the arrival of HK Thomas on 8 June. A little brother for Emily.

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Meg Aumann and Prudence Connell proudly announce the birth of HK Ashford, born 18 July. Little brother to Myla.

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Sonny and Chona Parumog are excited to announce the newest member of the family, HK Ystela born 20 July. Little sister to Jam, Jeam, CJ, Angel and Ynna.

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Shaun and Cherie Murphy are excited to announce the arrival of HK Tyga, born 19 August. Brother to Demi, Delta and Charlee.

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Brett and Emma Moore are excited to announce the birth of HK Albie, born 17 September. Little brother for Archie.

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Samuel and Courtney Wallace are excited to announce the safe arrival of Darcy-Leigh, born 11 October. Little sister to HK Nate.

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Simon and Kimberley Janiw are excited to announce the safe arrival of Elise, born on 21 October. Little sister to HK Cooper.

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Tithira Pannila Vithanage and Himale Lyanage are proud to announce the birth of HK Vimukthi on 18 November. Little brother for Nijane.

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Nathan and Rennae Whitney are excited to announce the safe arrival of HK Taj, born on 5 December. Little brother to Eva.

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Beren Bayliss and Melissa Vervest are proud to announce the safe arrival of HK William, born 7 January. Little brother to Sarah and Ella.

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Matthew and Amelia Smith are excited to announce the birth of Myles Blake Smith, born 12 January. Little brother for HK Poppy.

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

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

Lauren's wedding

With the support and love of their family and friends, sweethearts Lauren Trengove and Ben Lizio were delighted to marry by the sea at Barwon Heads on 8th October 2015.

Photo courtesy of 'Narelle Niksic Photography'.

For a second year in a row, Adrian is the maximum goal scorer in his soccer team, Meadow Park Under 11's.

He scored 22 goals and assistances - a huge achievement considering a few years back he couldn't even dream of being allowed to play in a soccer team!

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Ethan Recently Ethan had two open heart surgeries to correct a long list of complex CHDs. After being home in Ballarat for only two months, on 11th November, Ethan competed in his school's sports - something he previously could never do!

His family are so very proud of their little man smashing goals!

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Jackson This is Jack who has had two open heart operations in the past two years after being diagnosed with a coarctation of aorta Christmas Eve 2013. He has missed two terms of school in the past year but his huge heart and strength has carried him back and he has successfully completed both Year 10 and 11.

Jack has been voted in as College Captain for 2016 and will also be completing Year 12 heading towards Engineering. He works part time on his holidays as a labourer for a brick layer and loves life. His mum is very proud of him.

Most significantly and with a level of gratitude that is difficult to put into words, Jack would like to thank Igor Constantinov, Lucas Eastaugh, all nurses and staff at Desk A3 and Koala Ward.

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RCH Transition Support Service Working Towards Optimising Transition Care for Young People and their Families With the long-awaited arrival of transition support coordinator, Jamie McCarthy and transition youth mentor, Maddy Haydar, joining Rebecca Peters (transition youth mentor) and I in the RCH Transition Support Service team, we were excited about the opportunities which lay ahead to further expand the support provided to young people and families across the RCH and beyond.

Jamie comes to us from the Kelpie ward where he is a senior nurse unit manager with many years of experience caring for adolescents.

Maddy is an impressive young woman who is very passionate about young people’s mental health and volunteers as a youth ambassador for Headspace Collingwood and other community youth organisations, also coaching women’s Aussie Rules football in her spare time!

There are many highlights from 2015 but here is a wrap up of some of this year’s cardiac initiatives: 1. Congenital Heart Disease (CHD) Transition Project – this was funded through the Department of Health and Human Services and led by the project team, the Transition Support Service, RCH Cardiology, the Victorian Cardiac Clinical Network and the Victorian Paediatric Clinical Network. For the first time, this project enabled us to develop a more comprehensive understanding of where our young people are transferred to when they leave the care of the RCH and perspectives on transition from young people, parents and cardiologists. It helped to identify the increase in the number of young people being transferred to adult care with most continuing to receive their care through the public health sector. Proposed recommendations included the development of a CHD registry and the appointment of a CHD transition coordinator (to assist with transition preparation and education for patients and to support the transfer process). Follow up discussions are being held to determine next steps.

2. Fontan Registry Partnership Project - Transition Care Study – Evaluation of transition practices across Australia and New Zealand and the development of an optimal model of care for all young people with a Fontan, is currently in process. Although the genesis of this project is in Fontan, this project will have wider relevance and influence in the field of congenital heart disease. The Transition Support Service in partnership with Associate Professor Yves d’Udekem, Karin du Plessis and the Fontan Registry research team are the leads for this study. This important 5-year project has already resulted in some very positive outcomes including the appointment of a cardiac transition nurse coordinator at Westmead Children’s Hospital in Sydney, the creation of a cardiac transition youth mentor role at Starship Hospital in Auckland and the publication of a Fontan transition resource for patients and families which was kindly funded by HeartKids Victoria and Tasmania. Furthermore, preliminary evaluation of Fontan transition clinics highlights improvement is required in providing dedicated education for young people about their cardiac condition and their treatments/medications and supporting young people to become more independent in managing aspects of their healthcare.

3. ‘A Great Leap Forward’ - Royal Children’s Hospital to Royal Melbourne Hospital Transition Project – Whilst this significant project relates to ALL specialties and departments across the RCH and RMH, the improved transition care of young people with cardiac conditions and their families will be a key outcome of this project. Thank you to all of you who contributed your thoughts and feedback through our surveys and attendance at our recent Consumer Transition Forum. I encourage those of you who haven’t had the opportunity to do so, to get in touch. Your feedback is integral to the success of this very important project and will help us to develop better transition outcomes across the State. This exciting initiative is led by the Transition Support Service and the RMH Project Management team with executive leads from the RCH and RMH. Other key members on this project include: • HeartKids’ Support Manager and Acting Chair of the RCH Family Advisory Council, Tracy Stanley • Melbourne Primary Care Network (GPs) • Heads of Department and senior doctors and nurse coordinators (RCH and RMH) from a range of different areas including Cardiology (and Cardiac Surgery), Neurosurgery, Nephrology, Adolescent

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Health, Mental Health, Oncology, Haematology, Gastroenterology, Endocrinology, Bone Mineral Services, Dermatology, Allergy and Immunology, Developmental Medicine, General Medicine and Allied Health.

For the first time, the RCH and RMH will showcase together the exciting developments in transition across both campuses on March 21st 2016 at 8.30am …pop this date into your diaries now and look out for more details through the RCH and RMH websites and through HeartKids.

The Transition team has also had a very productive and eventful year with the following initiatives: 1. Expanding the service to support more young people and parents/carers in more departments across the RCH including Metabolic medicine, Intrathecal Baclofen Pump, Oncology, Haematology, Burns, Orthopaedics, Plastics and Maxillofacial surgery and Diabetes.

2. More joint RCH-Adult Service clinics with young people and parents/carers: The Transition Support Service has supported new joint clinics including Haematology (warfarin & sickle cell), Respiratory, Pulmonary Hypertension, Nephrology (renal transplant) and Oncology.

3. O ther major projects: Some of the other significant projects which were co-led by the Transition Support Service this year are/ were:

• Liver Transplant transition study – outcomes following transfer to the Austin

• Development and implementation of a transition website for young people with Inflammatory Bowel Disease

• ‘Where are they now?’ – Transfer outcomes for young adults with Spina Bifida and Prader Willi Syndrome

• Development of a Transition Model of Care for Young People with Intellectual Disability (including Autism Spectrum Disorder) and Mental Health Comorbidities.

4. M ajor events: supporting young people and parents/carers through major events such as the annual RCH and RMH Congenital Heart Disease transition forum, ‘Study With Your Health, Not Against It’ Education Forum, Consumer Transition event, the RCH Graduation Ceremony and the Australasian Adolescent Health Youth Conference.

5. Conferences: we were fortunate to be invited to deliver key note presentations at the following:

• International Society of Adolescent Health and Medicine (Los Angeles)

• Grand rounds at the Hospital for Sick Children (Toronto, Canada)

• Victorian Paediatric Clinical Network Conference (Melbourne)

• International Gastroenterological Congress (Brisbane)

• International Bioethics Conference (Melbourne)

• International Adolescent Young Adult Oncology Scientific Congress (Sydney)

• Fontan Education Day & Partnership Meeting (Sydney)

• Victorian Cystic Fibrosis Meeting (Melbourne)

• ‘Lost and Found’ Monash Children’s Hospital Transition Conference (Melbourne)

• Youth Health Forum (Melbourne)

On behalf of the RCH Transition Support Service team, we would like to extend our sincere appreciation to HeartKids Victoria and Tasmania for their continued support throughout this year. We wish you and your families a safe and enjoyable holiday season and look forward to another exciting year ahead in 2016!

EVELYN CULNANE Manager Transition Support Service The Royal Children’s Hospital (RCH) Melbourne

Hospital Happenings Congratulations Anne Shipp

We were thrilled that Anne Shipp won the 2015 Consumer Choice Award. Anne is the Cardiac Transplant Coordinator at The Royal Children’s Hospital.

Anne goes above and beyond looking after cardiac transplant patients and families.

Congratulations Anne!

Christmas Hampers Our Support team distributed Christmas hampers to Koala ward and Rosella ward families on Christmas Eve. Thank you to: • Signature Commercial who sponsored the hampers • Little Big Wren • Zaidee’s Rainbow Foundation • everyone who donated items • IAG General Insurance Company volunteers for packing the hampers • Jet Couriers who delivered the hampers to the hospital.

RCH Morning Teas

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!

Donated Items HeartKids donated bottle warmers for use on Koala ward.

Thank you Chemist Warehouse Brunswick for discounting the items for us.

IN HOSPITAL

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

RCH Christmas Lunch On the Tuesday before Christmas HeartKids held a Christmas-themed lunch for families at The Royal Children’s Hospital.

Support at MonashHeart

r Our Family Support Coordinato on ic clin the ts visi Sherrie McDonald pm 4.00 pm Wednesdays 1.00 Medicine Monash Children’s Clinic, Special se) Hou ch Centre (next to McCullo 246 Clayton Road, Clayton

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Support Team News Support Matters

HeartKids Youth

It was a busy December for HeartKids Youth. We held our first Youth Advisory Committee Orientation Day, A Young Person’s Heart Transplant Pizza Night as well as the first Youth Christmas Party.

We are excited to announce the introduction of our newest Youth Advisory Committee members. They are a fantastic group of young people who are very passionate about HeartKids and they have great ideas for future youth activities. 2016 is looking bright for HeartKids Youth so watch this space!

Our new Youth Advisory Committee Members include: Callum Werner, Em Blyth, Hope Malik, Phoebe Patterson, Shanise Bosmans as well as Christian Williams, Matthew Orchard and Eve Alexiadis who are not featured in this photo.

The Young Person’s Heart Transplant pizza night social was held in December, this gives young people (18-25) who attend the Young Person’s Heart Transplant outpatient clinic at The Alfred Hospital the opportunity to catch-up socially every six months. It was a great evening of awesome Pizza at A25 in South Yarra.

Even though it was a very hot and sticky day, we still had a few young people come along to our Youth Christmas party. It was a fun time of Barefoot Lawn Bowls and sausages on the BBQ. It was a great afternoon and we look forward to making the Christmas Youth Party an annual event for HeartKids Youth.

Welcome to the Summer edition of our magazine.

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.

The support team have a number of priority areas for 2016 to improve the support services we provide. The key areas are Youth Support, Regional Support, Bereavement Support, Respite for in-patient families and support in Tasmania. We always welcome your input and feedback so please contact us if you have any ideas.

We’ve hit the ground running in 2016 and there’s so much happening - for the latest information on upcoming activities and events please check the Events Calendar on our website www.heartkidsvictas.org.au and follow us on Facebook and Instagram.

Awareness Month and Sweetheart Day are our biggest opportunity to raise much-needed awareness about CHD and HeartKids. We invite you to participate by sending in your family’s CHD journey for our Social Media Awareness Campaign, participating in our Awareness Month Photo Challenge, sharing the Facts of the Day and HeartKids profiles on social media, volunteering or registering your school to take part in Sweetheart Day. 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/send us a message either via email or text message.

Best wishes Tracy, Sherrie, Rebecca & Helen

Make sure you keep your eye out for more youth social events throughout the year and watch this space for awesome news from our Youth Advisory Committee.

If you would like to make a suggestion for a youth activity or want to get more involved, please contact Rebecca Peters - Youth Support Coordinator (Thursdays) at rebecca.peters@heartkids.org.au

In Loving Memory of Jamie Starkey 25 July 1993 ~ 27 March 2014 It will soon be the 2nd anniversary of Jamie passing away in March

2014.

Jamie was a regular attendee at the HeartKids annual outing to the Box Hill Miniature Trains. In honour of Jamie, his parents, Wayne and Narelle , chose the 2015 Train Day to make a memorial presentation to HeartKi ds.

They are pictured here with Margaret Patullo from HeartKids, as they presented a cheque on behalf of The Starkey Family.

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Reflections In Loving Memory of Matthew Douglas George 28 May 2000 ~ 5 November 2015

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

Birth Dates

"See You Again" It's been a long day without you, my friend And I'll tell you all about it when I see you again We've come a long way from where we began Oh, I'll tell you all about it when I see you again Damn, who knew?

All the planes we flew Good things we've been through That I'll be standing right here talking to you ‘Bout another path I know we loved to hit the road and laugh But something told me that it wouldn't last Had to switch up Look at things different, see the bigger picture Those were the days Hard work forever pays Now I see you in a better place How could we not talk about family when family's all that we got?

Everything I went through you were standing there by my side And now you gon’ be with me for the last ride First you both go out your way And the vibe is feeling strong And what's small turn to a friendship A friendship turn into a bond And that bond will never be broken The love will never get lost And when brotherhood come first Then the line will never be crossed Established it on our own When that line had to be drawn And that line is what we reach So remember me when I'm gone So let the light guide your way, yeah Hold every memory as you go And every road you take will always lead you home, home.

Paul Livingstone 2 December 1981 Samuel Martin 3 December 1995 Benjamin Jones 11 December 2010 Amy Salas 11 December 1973 Blake Williams 12 December 2014 Jaime Ekberg 19 December 2005 Kristiana Thomaidis 20 December 2004 James Kelleher 21 December 1991 Lucas Stone 23 December 2009 Jonathan McGrath 29 December 2007 Olivia Leishman-Nasserallah 2 January 2013 Ethan Hanley 16 January 2002 Ethan Caruana 17 January 2003 Angus Puszkar 25 January 2013 Heidi Hansen 30 January 2007 Blake Gordon-Cooke 4 February 2012 Amy Dawson 11 February 2010 Hope West 12 February 2013 Andrew Lillis 13 February 2004 Eve Higgins 15 February 2013 Levi McCormack 17 February 2004 Phoebe Rolando 20 February 2009 Max Barker 21 February 2008 Stephen Buckman 26 February 1991

Anniversary Dates Jesse Cotter 1 December 2008 Coco Du Chateau 17 December 2013 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 Matthew Moran 15 January 2005 Lucy Salas 15 January 2011 Angus Puszkar 25 January 2013 Daniel Kabrovski 26 January 2013 Heidi Hansen 30 January 2007 Lucas Stone 31 January 2010 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

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

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Heartfelt Thanks...

Final Field Grand Final Lunch Racing industry networking organisation Final Field showed their continued support of HeartKids through their annual Grand Final Lunch held at 1000 Pound Bend bar on Thursday 1 October to a crowd of 80 guests.

Guests were entertained and inspired by champion Hall of Fame coach David Parkin, comedians Umpire Pete & Lehmo whilst enjoying fantastic food and company.

Daniel Sibberas spoke on behalf of HeartKids and took the audience through his personal journey with CHD and the role both football and HeartKids have played in that journey. Daniel spoke of the benefits the HeartKids Teen Camp have provided to him and others which was of particular interest to David Parkin with respect to how young people can act as mentors and help shape the futures of others.

Through the handball competition, auction and raffle over $3000 was raised for HeartKids.

Waverley Gardens Shopping Centre We were thrilled to welcome Waverley Gardens Shopping Centre as a new supporter into the HeartKids family last year.

Our wonderful friends at Waverley Gardens Shopping Centre conducted many activities in the lead-up to Christmas which assisted to raise awareness and much needed funds for HeartKids Victoria/Tasmania.

On 28 November local heart children and their siblings were excited to be part of the much anticipated Santa’s arrival parade at the centre. They enjoyed taking a ride on Thomas the Tank engine around the centre, accompanied by Santa, a marching band, Chase & Marshall from Nick Jr’s PAW Patrol, as well as Hoot and Hootabelle from Giggle and Hoot.

In addition the centre also conducted a number of additional activities for HeartKids, including: • All Wrapped Up with Love: A gift wrapping service run by HeartKids volunteers for a gold coin donation.

• Give a Little Love: a dedication zone located opposite the Customer Service Desk (in the heart of the centre) offering customers

the opportunity to write a special dedicated Christmas message to loved ones in return for a gold coin donation.

• A Drop Zone: Where local shoppers could leave nonperishable food and gifts for the Christmas hampers that we distribute to families at RCH on Christmas Eve. • An auction was also conducted on Saturday 19 December with lots of great items including Christmas gifts, Sporting Memorabilia, Weekend Away, and Helicopter rides. Heart parent Joanne Arrowsmith shared her family’s CHD journey and heart child William helped at the auction.

These great activities were a huge success as they assisted to raise over $4000.

We thank Waverley Gardens Shopping Centre for their valued support and we look forward to partnering with the Centre on a number of other events and activities throughout 2016.

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...for Your Support Broadmeadows Car & Bike Show In November Adam and Luisa Michielin once again held their extremely popular (and successful) Car and Bike Show at Penola Catholic Collage in Broadmeadows raising an incredible $16,000 for HeartKids. 280 cars and 50 bikes participated in beautiful sunshine.

Off the Cuff Our last Off The Cuff networking lunch was held in late November.

It proved to be a very special way in which to wrap up our year with Mike Brady being our key speaker.

Mike overviewed his personal (and professional) story. From his early beginnings in the United Kingdom through to his family's emigration to Australia and life in the Fisherman’s Bend Migrant Hostel….to him making his first hit record “Little Boy Sad” and embarking on a journey which led him to making jingles, which all those present almost instantly started to sing along to (SPC Baked Beans and Spaghetti; Hard Yakka; Lucky You’re With AAMI, just to name a few) and of course the story behind “Up There Cazaly”.

Particular thanks to Jet Couriers for their continued sponsorship of the luncheons and Paul Lunardi and Nelson Alexander for generously sponsoring the HeartKids Parents' table.

Please look out on our website for this year’s events.

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A Commitment to...

Murray River Marathon Shuzoku Martial Arts completed the Murray River Marathon and through their fundraising efforts raised $1981 for HeartKids.

Team Ethan Movie Fundraiser

One of our dedicated fundraisers and Heart Aunty of Ethan Brown recently held a Team Ethan Movie Day event to raise funds and awareness for HeartKids Victoria/Tasmania.

Children and adults alike enjoyed a very special screening of Hotel Transylvania 2 at the beautiful Regent Multiplex Cinema who generously supported the event…… and raised an amazing $1,106 through tickets sales and the raffles held on the day.

A heart-felt thanks to the businesses that supported this fundraiser: • Regent Multiplex Cinema • Duo Automotive • Karington Jewellery • Kryal Castle • Melbourne Star • TLC Photography

Christmas Lights

Every year Ron and Kath Renfrew decorate their home in Davey Street Cobram for Christmas and take donations for HeartKids Victoria/ Tasmania.

On Christmas Eve Santa had a very busy night giving children a soft toy and lollypop. Santa and Mrs Claus had a WOW of a time, and on behalf of the children and parents we thank them for coming and making Christmas Eve a night to remember. This year the event raised $916.10 for HeartKids.

Mrs Australia Globe

Mrs Australia Globe held their annual crowning on 17 October at The Trust on Flinders Lane. Mrs. Globe is one of the most celebrated international pageants for Misses in the world. HeartKids Victoria Chairperson Tania Tytherleigh and her daughter Flynne provided an insight into CHD and the support that HeartKids provides. Jyselle Des Forges was crowned as Mrs Australia Globe 2015/2016.

Through ticket sales and the auction of a necklace kindly donated by Ian Sharp Jewellery over $2000 was raised for HeartKids. We would like to thank Mrs Australia Globe and Kylie Tsiafogiannis, who runs the pageant, for making the event a success.

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...Making A Difference Volunteers

It is at this time of the year that we reflect back on the help that HeartKids has received from our many generous volunteers.

Volunteers really are the backbone of our charity – we rely on help from our HeartKids members and supporters, registered volunteers and corporate groups.

There were numerous volunteer roles throughout 2015 and we would like to say a huge thank you to all who have contributed.

A special thanks to our members and supporters, particularly Kiwanis who

Gift wrapping Volunteers at Myer Fountain Gate prior to Christmas

Waverley Gardens gift wrapping stall held for two weeks in December

Cuppa for HeartKids Campaign During August and September 2015 our annual Cuppa Campaign was held. A huge thank you to all who participated.

Your efforts saw a total of $18,064 raised which is almost twice the 2014 total ….what can we say but …..WOW!!!!

offer many of our member activities, and to the following corporate groups/organisations who have advertised our volunteer requests and allowed their staff to volunteer for us: ANZ, NAB, Bendigo Bank, People’s Choice Credit Union, Macquarie Bank (via Chantel Calderwood), Deloitte, AGL, IAG and GSNV. Corporate volunteers have been a great asset to us and have represented HeartKids well. We hope that you will all consider offering to help again in 2016.

We are particularly looking for volunteers in the days leading up to Sweetheart Day in February 2016 (please see page 4 of the magazine for details). If you would like to help with Sweetheart Day or see the volunteer opportunities currently available, please go to http://heartkidsvictas.org.au/how-you-canhelp/ volunteering/

Aiden’s Heart Awareness Family Fun Day Fundraiser In October Heart Mum Lisa Giblin and her amazing team put together a Family Fun Day fundraiser in Warragul.

An enormous amount of work went into the event which was supported by a fantastic group of sponsors and stall holders.

A particular thank you goes to Vic Solar & Gas as the principle supporter.

In every way a true “heart felt” thank you to the team for such a great event and result, with over $3000 raised through their efforts.

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Thank you for your recent gifts...

Airmaster

Holy Spirit Community School

Romanin, Manuela

Ample Café and Bar

Jet Couriers

Ashmead, Jessica

Kelgrove Holdings

Royal Automobile Club of Victoria (RACV) Ltd

Austin, Monica

Larsen, Warren

Shuzoku Martial Arts

Australian Car Wash Association

Little Tinkers

Signature Commercial

Australian Centre

LV Dance Promotions

Smith, Suzanne

Biggin & Scott

MacKenzie, Peter

The Cake Angels

BuzD Pty Ltd

Magistrates' Court of Victoria

Three Angels Boutique

Cardinia Foundation

McDonald, Kate

Timber Merchant Association Ball

Caruana, Kelly

Melbourne Cookie Company

Z Transport Group

City of Greater Bendigo

Methodist Ladies’ College

City of Whittlesea

Michielin, Luisa & Adam

Donations Celebrating Spencer Walker's First Birthday

Coles

Mildura RSL Angling Club

DODO

National Australia Bank

Drew, Tammy

Newscorp Pty Ltd

Federation Centres - Karingal Hub & Star Zone

Norton, Louise – Little Big Wren

Final Field

Ray, Paul

Freemasons Donations

Price, Matthew

Rhodes, Dyonne

Holden, Belinda

Memorial Donations in memory of: • Audrey Ebbage • Mayah Gambin

Real Estate Career Developers

Geelong FX-HZ Holden Car Club

Donations Celebrating Helen McAuliffe's Wedding

• Sam Martin • Jamie Starkey

Ritchies Stores Financial contributions over $500 are acknowledged in this column.

Are your details up to date?

Christmas Donation

We really like to correspond with you via email when we can. This helps us contact you quickly and saves on printing and postage costs.

Please help us by letting us know your email address and keep it up to date.

If you have moved house recently, please let us know your current contact details.

Please send updates to: heartkids@heartkids.org.au Thank you!

2016 Photo Request

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If your heart child is sta rting day care, kinder or school, or mo ving on to secondary or tertiary studies, please send us a photo for printing in the magazine.

Write a brief paragrap h telling us of their achievements and reme mber that high resolution photos print well.

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A generous donation was handed to HeartKids at Christmas time.

Georgia and Isaac Odd kindly brought a fundraising donation with them to the Christmas Party. As well as supporting HeartKids by donating their pocket money, Isaac ran a magic show and sold homemade lemonade. Their little sister Emma is a heart child.

Sponsors and Supporters Victorian Partners:

ROTARY CLUB of TULLAMARINE

National Supporters: Founding Sponsor Principal Partner Major Partners Founding Partner - Grants-In-Aid Corporate Supporters

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ry - CHD Awaren Month of Februa Day activities t 13 - Sweetheart Thu 11, Fri 12, Sa y ry - Sweetheart Da Sunday 14 Februa Bunnings

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Bunnings BBQ at Sat 27 February - 7 Colac Rd  Waurn Ponds, 23

Super Boss Day Friday 4 March o Throwdown  Saturday 5 March - BJJ Superher me - Super Boss Extre Sunday 6 March r the Kids fo n Ru  e 2016 - Th Sunday 20 March ity Golf Day ayla Cook's Char ak M ch ar M 25 i  Fr al Good Friday Appe Friday 25 March Field Golf Day  April date TBC - HeartKids/Final yuna Farm Day Sunday 3 April - M Show  ril – Razzamatazz 18, 19, 20 or 23 Ap Society of team Locomotive  Sunday 15 May - SVictoria, Moorabbin

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

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MELBOURNE METRO BRANCHES Bundoora Jessica Shakespeare 0409 165 004 jess.k.shakespeare@gmail.com Dandenong Lucy (Fatima) Hussain 0430 738 820 redrosesforlucy@hotmail.com East Bentleigh Maggie Stavrou (03) 9563 7133 maggiestavrou@live.com.au Eastern Suburbs Pavlina McMaster 0438 233 414 pavlina@fastmail.com.au Janita Felici 0422 976 024 janitafelici@gmail.com Frankston/Peninsula Maxine Selzer 0421 561 958 maxineselzer@msn.com Melton Lauren Tyrrell 0424 594 757 lauren.tyrrell82@gmail.com Pakenham Joanne Arrowsmith (03) 5967 7083 joarrow@bigpond.net.au Point Cook Jonathan Mackley 0411 114 008 jonathan@mackleyhq.com Tullamarine Paige Donnelly 0424 239 964 paigeeloo@gmail.com REGIONAL BRANCHES VICTORIA Albury/Wodonga Cathie Kelly 0417 049 341 clonnie33@hotmail.com Bairnsdale Caroline Foard 0438 928 821 cfoardy@yahoo.com

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HeartKids Vic Inc

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CONTACT US PO Box 803 Parkville Victoria 3052

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P: (03) 9329 0446 E: heartkids@heartkids.org.au

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

Facebook: HeartKids Victoria/Tasmania Twitter: @HeartKidsVicTas Instagram: heartkidsvictas

ARN: A0021470B ABN: 16 336 986 918

www.heartkidsvictas.org.au

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Contact Details Ballarat Rohini Dobell & Alan Smith 0407 851 648 alan_17@live.com.au Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 goliathgroup@bigpond.com Clare Fountain 0418 140 347 clare@sorted4life.com.au Nadine Daly 0413 710 342 dalys@tpg.com.au Cobram Bianca Quinane 0419 674 408 biancz1979@hotmail.com Echuca/Moama Tracey Hard 0438 962 056 tracnsteve@bigpond.com Geelong Libby Gibson (03) 5250 2439 0411 057 905 libway2000@yahoo.com Horsham Gaynor Baker (03) 5384 2280 mtbcarpentry@bigpond.com Kyneton/Woodend Amy Crosbie 0411 552 264 amy_emmett@hotmail.com Mildura Caitlin Andrews 0412 447 269 caitlin.andrews@hotmail.com Portland Kerry Sluggett (03) 5523 2503 0418 312 320 ksluggett@iinet.net.au Shepparton Cheryl Alexander (03) 5825 4005 chezalex70@bigpond.com Stawell Leanne Amarant 0419 864 412 leanneamarant@hotmail.com

Traralgon Chrissy Ades 0400 857 813 cat_razor@hotmail.com Wangaratta Lisa Dekeling 0421 655 636 & Shane Hack 0488 221 184 lisadekeling@optusnet.com.au Wonthaggi Erin Howell 0431 702 863 howells.8@bigpond.com TASMANIA Burnie/Devonport Claire Gluyas 0408 351 661 richardsclaire@yahoo.co.uk Hobart Paul Hyland (03) 6247 8435 0418 561 504 paul.hyland1@bigpond.com Launceston Kylie Smith (03) 6393 6240 0448 983 587 kylie.smith@heartkids.org.au SPECIAL INTEREST GROUPS 22q11 The VCFS and 22q11 Foundation Maria Kamper www.vcfs22q.org.au BEREAVED FAMILIES SUPPORT CHD Child Loss AUSTRALIA Facebook group BRUGADA SYNDROME Pavlina McMaster 0438 233 414 pavlina@fastmail.com.au CARDIOMYOPATHY ASSN of AUST. Website: www.cmaa.org.au/ DOWN SYNDROME Sam Jackson 0439 360 035 mummee1973@optusnet.com.au

EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 kjsrms@bigpond.com hearts4heart - Support for Adults with Heart Disease Tanya Hall 0426 240 636 info@hearts4heart.net.au hearts4heart.net.au HYPOPLASTIC LEFT HEART SYNDROME & SIMILAR CONDITIONS www.hearts-of-hope.org Leanne Amarant (Victoria) (03) 5358 2945 Leanneamarant@hotmail.com Csaba Ovari (Tasmania) (03) 6229 8169 csaba.ovari@hearts-of-hope.org KABUKI SYNDROME Stacey McKiernan (03) 5275 1542 stacey@sakks.org Website: www.sakks.org KAWASAKI DISEASE Shirley Mates (03) 9894 1257 info@kdfoundation.org.au Website: www.kdfoundation.org.au LONG QT SYNDROME (LQTS) Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids.org.au www.sads.org.au or www.sads.org.uk/ MULTIPLE BIRTHS April Schubert 0407 551 967 (02) 6056 6448 april.schubert@bigpond.com MUSLIM FAMILIES Lucy (Fatima) Hussain 0430 738 820 redrosesforlucy@hotmail.com OVER 18’s Erin Cervelli (03) 9513 9030 PACEMAKERS Mandy Tichelaar (03) 9728 6984