Quarterly Magazine for Victoria and Tasmania
Volume 24 Issue 4
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Marathon with Heart Christmas Celebrations Tween Camp
Matters of the Heart -
Chief Executive Officer First and foremost and on behalf of all at HeartKids, I hope your holiday season was a very happy one. It is hard to believe that we are already well into the new year and, as usual, the weeks fly past.
February is HeartKids Awareness Month and we are asking for all our members and supporters to consider how you may be able to assist us. In this edition of our Magazine you will see a number of ways you can engage with us....if you are in a position to help out, please do. It is not only enormously appreciated, but quite often makes the key difference between what we would like to do and what we actually can do. Another very important part of 2015 is that HeartKids Victoria is celebrating our 25th anniversary. The Chairman has formed a Committee to look at various ways in which this milestone, and all those who have been a part of creating this great organisation, can be appropriately recognised. Any suggestions will be most welcomed. Please feel free to forward any thoughts to firstname.lastname@example.org Finally, just before Christmas we farewelled a very important member of our Family Support team, Amy Heafield. Many of you would know Amy and benefited from her commitment and professionalism and will no doubt join with me in wishing her and her family all the best in their new life chapter in Perth. However, in saying goodbye to Amy, we also welcomed Rebecca Peters to the team to work with Tracy and Sherrie. Rebecca is very well known at The Royal Children’s Hospital through her work in transition. Warm regards Norm Norm Hutton CEO, HeartKids Vic/Tas
We’re moving late in January
New address: Suite 33 / 204-218 Dryburgh Street North Melbourne
Our Team HeartKids Vic Inc Board 2014-2015 * Chairperson: Phil Riggio * Vice Chairperson: Terry Hopkins * Treasurer: Joseph Eid * Secretary: Tania Tytherleigh * General Board Members: Anthony Flapper Claire Gluyas Erin Cervelli Jonathan Mackley David Cervelli
HeartKids Vic Inc Employees * Chief Executive Officer Norm Hutton 0409 874 452 email@example.com * Support Manager Tracy Stanley 0478 091 773 firstname.lastname@example.org * Family Support Coordinator Sherrie McDonald 0431 544 510 email@example.com * Youth Support Coordinator Rebecca Peters firstname.lastname@example.org * Member Activities Coordinator Lynette McCoullough email@example.com * Membership/Magazine Coordinator Margaret Patullo firstname.lastname@example.org * Development Manager Sandra Zlatanovski email@example.com * Operations and Administration Coordinator Paola Rossi firstname.lastname@example.org * Fundraiser & Events Coordinator Pruedonce Bainbridge email@example.com * Magazine firstname.lastname@example.org
No change to phone number or postal address: (03) 9329 0446 PO Box 803, PARKVILLE VIC 3052
tmas Morning Tea Front cover: Myer Fountain Gate Chris ith Photo courtesy of Joanne Arrowsm mation for this edition. infor and os phot sent Thanks to all who to: email@example.com send ome Contributions are always welc s. ts On Call for printing our magazine Thanks to Fuji Xerox and Documen processing of some digital images. Thanks to Gordon Patullo for post
HeartKids Vic Inc proudly supports children with heart disease and their families throughout Victoria and Tasmania. For Tasmanian enquiries - please refe r to the back page for our Tasmanian Branch Coordinator s’ contact details.
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 Inc. Vic HeartKids to gement acknowled endorsement Please note that articles published in this magazine do not imply and may not reflect overall views of HeartKids Vic Inc. 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 HeartKids Australia Education Day for Adults with Childhood Heart Disease Date & Venue: Saturday 21st February; Mercure Sydney Register your interest: ACHD@heartkids.org.au
Run for the Kids Date: Sunday 22nd March 2015 We would like to have a large presence at this year’s Run for the Kids. Please register at www.runforthekids.com.au Our team name is HeartKids Victoria and the Team Password is heartkids1 There are two courses, each with several colour-coded sections for running, jogging, walking, walking with prams, etc 15.5km event – Entry fee $53 of which $31.60 is donated to the Good Friday Appeal. Participants will assemble in the appropriate colour zone in Alexandra Avenue. 5.4km event – Entry fee $48 of which $29.60 is donated to the Good Friday Appeal. For the first time, in 2015 the Short Course route includes the Domain Tunnel! Participants assemble in Boathouse Drive in time for the start of their colour zone. Full event details: http://www.runforthekids.com.au/ How to join a Team: http://www.runforthekids.com.au/entrants/ team-information/joining-a-team-step-by-step-instructions/
In This Issue
3 Coming Events 4 HeartKids Awareness Month 2 4 Super Boss Day 5 Marathon with Heart 6-7 HeartKids Families enjoying Christmas 8-9 Lennox's Story 10-11 Members enjoying Amazing Activities 12 Branch News 13 Tasmania News 13 Starting School 14 Congratulations 15 Hospital Happenings 16 Support Matters 17 Reflections 18-19 Heartfelt Thanks for your Support 20-21 Acknowledging Special Efforts 22 Donation Acknowledgements 23 Sponsors and Supporters 24 Contact Details and Diary Dates
Shepparton Picnic Date & Time: Sunday 29th March 2015, 10am onwards Venue: SPC Ardmona KidsTown, Midland Highway, Mooroopna Courtesy of the Kiwanis Division 7 clubs, families with a heart child or heart angel, their friends and extended family are invited to attend a free family picnic and fun day. Free entry to KidsTown Adventure Playground and a sausage sizzle lunch will be provided. Please visit www.kidstown.org.au for more information about the venue. To register please book on www.trybooking.com/GRLO by the RSVP Sun 15th March. For any information about the event, please contact Cheryl Alexander on (03) 5825 4005 or chezalex70@bigpond. com Any problems with booking, please contact Lynette from HeartKids on 0418 548 879 or firstname.lastname@example.org
Makayla Cook's Charity Golf Day Date & Venue: Friday 3rd April, Drouin Golf and Country Club 3 person Ambrose event; a handicapped & non handicapped event. Lots of great prizes to be won and 7 competition holes. Function to follow with a live auction, raffle and live music, food and drinks. Contact Jackie Cook 0488 201 200 or email@example.com for further details or to request an entry form!
Good Friday Appeal Kids Day Out Date & Venue: F riday 3rd April, Melbourne Convention and Exhibition Centre (MCEC) in South Wharf Be part of the Good Friday Appeal at the Kids Day Out in 2015. Come and join the fun, watch the broadcast and help raise money on Friday 3 April 2015. Please visit www.goodfridayappeal.com.au for all the details.
Razzamatazz Tasmania We hope to have free tickets to Razzamatazz shows in Tasmania. Please email Lynette on firstname.lastname@example.org if you would like to express your interest in attending. Official tickets will need to be sent to you. Times are still to be confirmed. Devonport: Thursday 9th April, Devonport Entertainment and Convention Centre, via Rotary Club of Devonport
Burnie: Friday 10th April, Burnie Arts & Function Centre, via Rotary Club of Sommerset Launceston: Saturday 11th April, Door of Hope Launceston, via Children First Foundation
Myuna Farm Date & Time: Sunday 12th April 2015, 10am – 2pm Venue: Myuna Farm, 182 Kidds Road, Doveton. The Kiwanis Club of Sunbury is pleased to offer our families a great day out. Entry to the farm will be by gold coin donation (per family). Your family will receive some free train and pony ride tickets and you will be able to visit the animals in the farm including the baby nursery. A free sausage sizzle lunch will be provided so lunch time will give families an opportunity to meet. You can also bring along your own snacks/lunch if you prefer. This event is for immediate family only as places are limited and we would like to accommodate as many HeartKids families as possible. Register via www.trybooking.com/EYQZ by Friday 27th March 2015. Contact Lynette on email@example.com. au or ring her on 0418 548 879 for further details.
Razzamatazz - Melbourne
Date: Sat 9th May 2015 Venue: Melbourne Convention and Entertainment Centre Courtesy of the Rotary Club of Preston, we will be offered free tickets to this event. Times are still to be confirmed. If you are interested in attending this event, please express your interest by booking on www. trybooking.com/GRLX Email Lynette on lynette. firstname.lastname@example.org or ring her on 0418 548 879 if you have any problems booking.
HeartKids Awareness Month 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 email@example.com
BraveHeart Bear Colouring Competition
Here’s a great way for children aged 14 and under to be involved in Awareness Month. For your chance to win a great Superhero themed prize please download our BraveHeartBear Colouring Competition sheet at http://heartkidsvictas.org.au/ braveheart-bear-colouring-competition Please send completed entries with your name, age and address details on the back to: E: firstname.lastname@example.org or post to: BraveHeart Bear Colouring Competition, HeartKids Victoria, PO Box 803, Parkville VIC 3052. Entries close 1 March 2015
Super Boss Day
Be a Sweetheart this Valentine’s Day Sweetheart day, held annually on 14 February, raises funds that will improve the lives of children with childhood heart disease. To support Sweetheart Day you can: romote and host an event with •P friends, family, colleagues or even classmates in February and have a fun-filled day getting together how your support by dressing in •S Red or Blue, and get your family and friends to sponsor your event by donating whatever they can to help fight CHD! ring Valentine's day themed cakes and sweets to share with •B your friends ou could even send a virtual gift to your Valentine via the •Y website For some inspiring SweetHeart Day fundraising ideas and to register your interest please visit https://www.sweetheartday.org.au/
Volunteer for HeartKids this Awareness Month
From shaking money tins, wrapping presents, to selling our adorable BraveHeart Bears, we have plenty of opportunities for volunteers to get involved this February. For further information please email your expressions of interest to email@example.com
The 19th February will see our very first Super Boss Day. We have been incredibly grateful for the amazing publicity and support it has gained (our launch featured in the media as far and wide as the UK, USA, China and India). Hopefully this puts us in a good position to make it a major feature of HeartKids’ year and Awareness Month well into the future. As there are so many organisations participating it would be difficult to name them all in this piece, however, we would like to acknowledge those who are going above and beyond to help make not only the concept successful but also their individual “challenge". Moose Toys, through CEO Paul Solomon, is incorporating all of their team leaders (Moose Heads) to compete with each other as separate Super Bosses. Our great supporters at Biggin and Scott were one of the first to sign up and Russell Cambridge is setting the pace amongst their retail team. John and Anita Grimbos (Grimbos Building Surveyors) were also quickly on board as were Michelle and Richard Bodinnar, together with former Board Member Melissa Karatjas and her company Real Estate Career Developers. Michael Sloan and Anthony Edmonds, the directors of The Successful Investor in Collingwood, have jumped on board as Super Bosses and are doing the “battle off” in their office to see who can raise more money. Then there is People’s Choice, who have now added Super Boss to the PJs Run and Community Lottery to further support HeartKids. Clarke Morgan, Vice Chair at UBS Wealth Management, will no doubt turn heads as a Super Boss on 19th February as will Professor Ian Meredith at MonashHeart. But to all those who have registered themselves or laid down the challenge to their boss, a massive thank you......and for those yet to do it, please jump on the website (www.superbossday.org.au) or call the office for assistance, and join in the fun.
Marathon With Heart In December Ed Wilkinson ran from Canberra to Sydney raising over $13,000 for HeartKids. From Parliament House to the Opera House, the run covered 363kms over 8 days, involving more distance than a marathon each day from Saturday 13 December to Saturday 20 December. Childhood heart disease is a cause close to Ed’s family. His father, paediatric cardiologist Professor Jim Wilkinson, has been working in this field for almost 50 years, and has worked closely with HeartKids as a patron and a medical adviser. Professor Wilkinson helped set up Australia’s first child heart transplant unit at The Royal Children’s Hospital in Melbourne in the late 1980s. He has since retired but was involved in Ed’s run, driving the support vehicle.
Day 1 - 46kms from Canberra to a bit past Bungendore. Touched by the fantastic send off including a few sage words of advice from Rob de Castella and ACT Government Minister Shane Rattenbury, as well as an escort from the Achilles team and the Gungahlin Rural Fire Service. Thanks to all who made it down - it meant a lot. Only 317kms to go. Day 2 - 46kms from outside Bungendore to a bit south of Windellama. Overall total: 92kms. Had my wife Caroline's great company cycling alongside me the whole way. I think 4.5 hours together experiencing this adventure - one of the best dates we've ever had. Quarter of the way to Sydney! Day 3 - 46kms. Overall total now 138kms. A foggy morning made for an eerie but beautiful start out of Windellama. A roadside massage from Caroline kept the legs going at Nerriga, and then a nasty but ultimately satisfying 5km ascent into the Morton National Park to round out the day. Little under twothirds of the way to go. Day 4 - 47.5kms to Nowra. Overall total 185.5kms. Overcast, drizzly and downhill - today should have been easier, but my body wanted me to know how much it resents me right now. Thankfully I had some inspiration from a little champion called James who is a heart child from Canberra - I wrote his name on my hand to lift me when things got tough. In other developments... HALF WAY TO SYDNEY!
Day 5 - 48kms from Nowra to Kiama. Overall total 233kms. If yesterday was sent to test me then today was the reward for pushing through. With a few extra heart children’s names added to my hand, we reached the glorious coast at Werri Beach and closed out the day with the stunning, if rather hilly, Kiama Coast Trail. Day 6 - 46kms from Kiama Heights to Wollongong (overall total 279kms). From million dollar views to industrial Port Kembla. I had to run on the highway for about 2km south of Shellharbour but was rewarded with our first sign to Sydney. 3/4 of the way there. Only 2 days to go! Day 7 - 47kms (overall total 326kms) from Wollongong to the Royal National Park. What a stunning day's journey the pick of the week. From the gorgeous beach suburbs north of Wollongong to the cliff-side villages of Coledale, Wombarra and Scarborough. The phenomenal Sea Cliff Bridge and then the stunning, if slightly treacherous, ascent to, and through, the Royal National Park. Only 1 day to go to Sydney! I think I've got this. Day 8 - done! Overall total 363kms. Fantastic last day from the Royal National Park through the Shire and down through Hyde Park to the Opera House. Thanks so much to friends and family who came down. Blown away by the support - time for a rest. HeartKids was thrilled that Ed and his wife Caroline visited us while they were in Melbourne. They attended a morning tea where they met some of the families who enjoyed following the progress of the run.
HeartKids Families... Geelong Branch
Despite the terrible weather 15 Geelong families enjoyed their Christmas party at Adventure Park, Geelong. It was perfect weather to stay together as a group and chat. The rain finally stopped at lunchtime so Santa could pay a visit and hand out presents kindly donated again this year by Big W Geelong. Some of the kids were even brave enough to enter the water park and enjoy the waterslides. Thank you to all those families who attended and to all who made donations towards the day.
Bendigo Branch The families of the Bendigo Branch held a Christmas BBQ on 23rd November at White Hills Gardens. Thanks to the Bendigo Kiwanis Club for very kindly offering to cater and run the BBQ. The children released balloons in memory of their groupâ€™s Heart Angels - blue was for Blake, pink for Thomasina & purple for Jacob.
Myer Fountain Gate Variety Christmas Party
On Thursday 11th December 68 heart children attended the Annual Variety Christmas Party at the Melbourne Convention and Exhibition Centre. It was a wonderful day, the children were lucky enough to be able to go on rides, play carnival games, shoot basketballs, pat the baby animals, participate in art and craft tables, enjoy fantastic entertainment and much more. They were also able to get their photo taken with some of their favourite characters including Sesame Street, Frozen, Transformers, Peppa Pig to name a few. Lunch, snacks and drinks were also provided and the children received a present from Santa. Variety staff and their volunteers were always around to lend a helping hand and made sure all the children had a great time. Overall it was a fabulous day and to see the smiles on everyone's faces made the day even better.
On 15 December five local families were treated to a wonderful morning at Myer Fountain Gate. They were met at the front of the store by Mrs Claus, a clown & then Santa. Each family had their photos taken with Santa and then they got involved with craft activities â€“ bauble decorating station, sand wizard station and enjoyed a wonderful morning tea. Thank you very much to all the staff at Myer Fountain Gate for organising such a wonderful morning for our families.
...enjoying Christmas Celebrations Christmas Party for Special Children On Sunday 14 December our families celebrated Christmas at the Christmas Party for Special Children at Moonee Valley racecourse. Guests enjoyed a three hour stage show featuring entertainment by Bethany Fisher, Alpha Shows, Hey Dee Ho, George Calombaris, Busy Feet – Special Needs dance group, Santa and his Elf, Lindi Jane & Snaps Kakadu Club, Magician Scott Stunz and the Camp Quality Puppets. The children enjoyed numerous rides and activities, caricatures with George Haddon and others, roving entertainers and great displays, lunch, ice creams and a visit to the Toy Room where they received a present to take home. Our families met at the HeartKids marquee, which was in its own zone on the hill, where they could purchase a ticket in our raffle and enjoy catching up with each other. The Cake Angels once again created a masterpiece – an amazing 12 tiered cake featuring the 'Twelve Days of Christmas'. Everyone enjoyed looking at the beautiful creation. It was cut by Celebrity Chef Geroge Calombaris and was very delicious. A big thank you to the following people who helped make the party a success: • The Christmas party for Special Children committee • Volunteers who set up the day before and packed the Under Three Years gift bags – Gordon & Margaret Patullo, Rigan Tytherleigh, Tracy & Kiana Stanley • Volunteers on the day - Karin Burgess, Lauren Patullo, Andrew Bryant, Jasmyn & Abby McDonald, Kiana Stanley, Lynette McCoullough, Margaret Patullo, Sherrie McDonald, Rebecca Peters and Tracy Stanley For their donation of goods we sincerely thank: • The Cake Angels • Little Tinkers • Moose Toys • Pepsico
Our miracle son entered this world in 2012 and changed our lives forever! Our world started to spiral quickly out of control at 27 weeks pregnant when our son was diagnosed with a collapsed lung due to a pleural effusion. We are from Tasmania so we were immediately sent to the Royal Women's Hospital in Melbourne. As it was just meant to be a day visit, we decided my husband would stay home with our two year old and my sister would accompany me to my appointment. This is how underprepared we were. “You have a very, very sick baby and he may not survive”, the doctor said. ”What? Was I in a dream? But I can feel him! How can he be sick? Is he dying? The agony of being given three choices, and ultimately being asked to play God, was gut wrenching! With my baby’s future uncertain, I planned to see through what I signed up for when I chose to become a mother. I was going to fight for my baby….., and so our journey began! I had three amnioreduction & thoracocentesis procedures which removed amniotic fluid from myself and also from my unborn baby's chest cavity to test for genetic disorders but all tests kept coming back clear. So why was this happening? Why was my unborn child gravely ill? Finally on my second amnioreduction, after removing two litres of amniotic fluid and 150mls of fluid off my son’s chest a large mass, a tumour was found…., was it cancer? It was the longest ten minutes of my life as we waited for results. If it was cancer, they said there was nothing they could do. So we waited, with silent tears rolling down my face. It wasn't cancer
but they had no idea what it was! A day later after extensive research we had an answer - it was an extremely vascular haemangioma! It was the first case in Australia and third in the world. Due to its vascularity it was deemed inoperable as he would bleed to death. So the aim was to keep him inside as long as possible but worsening polyhydramnios meant that what should have been a drainage every ten days narrowed quickly to just three. Fluid was starting to go to his head and he was becoming distressed so at thirty two weeks he needed to come out. I frantically rang my husband who had only just left Melbourne a few days before to be with our two year old son and asked him to to come back quickly. At 2:55am our son was born crying, which was incredible considering how sick he was and with a collapsed lung. I met my husband in Recovery at 3:15am and I instantly sent him to find our son who had been whisked away to be worked on by a team of doctors. About 9pm that night the transport team with my husband, mother and sister bought my little boy to my room before they transferred him to The Royal Children’s Hospital. It was three days before I saw him again. My husband constantly travelled between the two of us at separate hospitals! We needed to give this fighter a name. A few were considered as I studied photos of our little boy from my husband’s phone. I needed something strong. We settled on Lennox Raphael which means: strong, willing and healer of the sick. I met my little boy properly for the first time three days after his arrival. There were so many machines and tubes and cords I didn't even see him - this tiny little boy amongst things I'd never imagined seeing. He turned his head and opened his little eyes as if he knew his mummy was finally by his side. And there I stayed for three long months in NICU. He was treated initially with a drug called Propranolol which was aimed at shrinking his tumour. He also had problems with a right-sided chylothorax for which he had two chest drains inserted and they remained in for about two months. The Propranolol wasn't working - in fact at fourteen days of age he went into cardiac failure. The nurse rubbed my arm and said “We're doing all we can”, as I watched doctors working on him as his heart rate plummeted and he turned grey. After about an hour he was stable again. I went back to my little room at
Ronald MacDonald House, collapsed at the foot of my bed and cried. Why was this happening? What did I do wrong!? I felt this was getting too tough and I couldn't see how my little man was going to overcome so many obstacles. I made the heartbreaking decision that night that I would go into his room in the morning and tell him, "If this is too hard, you don't have to fight. I don't want you to hang on if you can't." That morning, feeling sick to my stomach, I entered his room and found that our little boy, despite almost losing him the night before, was thrashing about that cot as if to say, "I'm not giving up yet Mum." I told him instead, "As long as you’re fighting, I'm fighting." It was decided to start a new treatment in the form of chemotherapy. My baby wasn't even meant to be born yet and he'd be starting chemotherapy at thirty-four weeks gestation! All his hair, eye brows and eye lashes fell out. His little bowel stopped working from the chemotherapy, his tummy blew up like a balloon, not to mention the constant chyle (lymphatic fluid) pouring from his chest drains. Three long months passed and it was finally time to bring our little boy home to Tassie! He had his very own medical plane transfer him to the Launceston hospital where he would stay for two weeks while I tried to teach him to breast feed. He did breast feed and we were finally able to go home. He was in and out of hospital for the first year mainly due to bronchiolitis, common after being intubated for months from birth. We finally had built our son’s health up and he was now ready for the big one - open heart surgery. It was always on the cards but I was hoping his little heart would fix itself but it didn't, it got worse. So at eighteen months of age, back to Melbourne we went. He had his pulmonary valve ballooned at twelve months of age but after further assessment, more work needed to be done. His surgery went well and we met him in intensive care, relieved it was all over. Or so we thought… it was then revealed that Lennox couldn't breathe at all. His lips turned blue and he was on full oxygen support yet again. He had a pericardial effusion (fluid around his heart) and swelling from the surgery and also had developed a nasty respiratory virus, RSV, which all together had closed off his airways and he was put into isolation. Time again would prove to be our saviour, two months in fact. He ended up back
in theatre a total of three times, to drain fluid and also remove sutures. This world of hospitals can do two things - break you or make you stronger. It's made me so appreciative of life and it made me realise how some people fight so damn hard to be in it. Lennox is one incredibly lucky little boy and I feel totally blessed and lucky he's come into our lives because he has taught me things I would never have otherwise wanted to experience. You never know just how strong you are until you go through heartache. Lennox is now 2 ½ years old and doing so very well. Lennox is such a character. Doctors used to joke that it'll be Lenny's way or the high way, and he and only he would dictate what would and wouldn't work! He's incredibly strong bodied and willed. He's had to be, but I am forever grateful for his fighting spirit. He loves to laugh and have a good time, he is very social and is obsessed with tractors and trains. He just adores his big brother Seb who is four and is very protective of Lenny. They are best mates. He amazes me every day! He always has a smile on his cheeky face! We don't know what the future holds for our Lennox but one thing is for sure - we'll never give up, because we know he won't! Written by Lennox’s Mum, Alex
Our Members enjoying... FunFlight - Victoria & Tasmania Close to 200 HeartKids family members were offered a place at the recent FunFlight event when they were spoilt for the day and offered a free joy flight and lunch. Many families told us the day was glorious and the flight was such an exhilarating experience. Thank you so much to the FunFlight team, particularly the co-ordinator Amy Emmett, and to the aero clubs who donated the fuel for the planes, the pilots who volunteered their time and the Rotary/Lions clubs who organised lunch. Thanks to our HeartKids representatives on the day and a special thanks to all who organised extra fun activities for the children.
World Festival of Magic HeartKids families enjoyed the World Festival of Magic. The talented jugglers and magicians kept the audience in awe. Our thanks go to the Lions Club of Melbourne Markets for giving us the free tickets.
Carn the Kids Thanks to LeasePlan and Melbourne Victory Football Club, HeartKids families enjoyed all the excitement of a great game of soccer between Melbourne Victory and Brisbane Roar at Etihad Stadium on 21 November.
...Amazing Activities Tween Camp Tween Camp 2014 was a success with a record number of heart children attending. This year also saw the fabulous addition of siblings to Tween Camp. The location of camp this year, Mt Morton in Belgrave, was a fantastic setting for our weekend. In the whirlwind of almost two days at camp, we ate (a lot) and packed in a number of indoor & outdoor activities, which started with launching ourselves on the flying fox, shooting arrows on an archery field, trying our hand at orienteering & helping each other across the climbing wall. This was all before lunchtime! Saturday afternoon saw our activities take a more creative turn where everyone, including the leaders found their inner artist with the help of The Art Cabriolet team. And then the rains came. With some quick thinking, post dinner activities were moved indoors, along with an indoor fire for cooking s'mores. Sunday morning still saw the rain coming down, so after breakfast and packing up, more indoors activities ensued. Once the first parents started arriving it truly signaled the end of camp. With a quick lunch, the bus to the RCH left to get tweens back to the city, whilst the remaining tweens and their parents slowly left just as the skies were clearing. And then camp was over for another year. A big thank you to David, Quila, Shaun, Tony, Stephanie, Steve & our fabulous nurse, Lauren who came along to wrangle/hangout/support the kids on Tween Camp. Without our voluntary team, these events can not happen! We hope everyone had a great time and we hope to see our Tweens again soon. Erin Cervelli Camp Supervisor
Tween Camp Art Presentation
William Arrowsmith presented the artworks created at Tween Camp to Biggin & Scott as a heartfelt way of expressing our thanks for all that they do to support HeartKids.
Biggin & Scott Cheque Presentation Russell Cambridge from Biggin & Scott presented Norm Hutton & Tracy Stanley with a cheque for $5000 being commission from the sale of Darren & Dee's apartment on The Block Glasshouse.
Branch News HeartKids has a number of Branches around Victoria and Tasmania. You are welcome to contact your local Branch Coordinator to introduce yourself so the Coordinator can keep you informed about activities in your area. Please see contact details on the back page of this magazine and follow us on Facebook or watch the Events Calendar on our website for upcoming Catch-up dates: http://heartkidsvictas.org.au/events/
Coordinator Updates We send a sincere thank you to two members who have recently retired from being the Branch Coordinator in their region - Amy Heafield at Bundoora and Karen Howard at Point Cook. Please read about our new Coordinators on this page and find their contact details on the back page. The VCFS and 22q11 Foundation is able to support families with a child with 22q11 - their contact details are on page 24. We thank HK mum Audrey Cater for her willingness to assist others with an interest in this condition.
Jess Shakespeare - Bundoora
My name is Jessica Shakespeare and I am the new HeartKids Branch Coordinator for the Bundoora region. I have two children, Ava who is 5 and our HeartKid Austin who is three years old. Austin has Wolff-Parkinson-White Syndrome, which means he has an extra electrical pathway in his heart which can risk sending him into supraventricular tachycardia (SVT). I am really excited to be taking over the role from Amy as she sadly leaves us to move to Perth - she sure leaves big shoes to fill! Our family has had a huge amount of support from the monthly catch ups. It is so reassuring to speak with other families who are going through the same struggles and know you are not alone.
Jonathan Mackley - Point Cook Hello, my name is Jonathan. I’m a 39 year old father and I was born with a complex congenital heart defect. My wife Nyree and I have lived in Point Cook since 2002 and we have a six year old daughter Juliet. I have the privilege of being the new Point Cook HeartKids Branch Coordinator. I aim to continue with catch-ups on a monthly basis and so invite friends and families of HeartKids, HeartAdults and HeartAngels to join my family on the 2nd Saturday of each month starting at 9:30am at the Public Playground located behind Alamanda Café (Google map link is bit.ly/alamandapark).
Geelong Disco Thank you to all those families who came along to the HeartKids Geelong Disco on 30th September to make it enjoyable. A special thanks to my volunteers on the day: • Brenda Holland and Rosa Kuze for the photography. • Cassie Silva and Jeanette De Boer for their face painting talents (the most popular activity of the day). • Noelene Cooper for her divine massage skills. There were a lot of satisfied Mums. • Victoria Miller for your hair spray designs. • Kerri Loney and Hepburn Springs for supplying the drinks. • Big W for providing me with the prizes for our dance offs. • Lastly thank you to Mitch Pilgrim for DJ'ing. Amazing job as always. The kids had a blast. I am pleased to say that with all your combined efforts our Geelong group raised $260 for 'Cuppa for HeartKids'. Awesome effort! Written by Libby Gibson
Keep two special dates for your calendar - our Branch Family BBQs planned for 12-2pm on Saturday 11th April and Saturday 12th September - usual location, regardless of weather. Monthly details will be posted on HeartKids Vic/Tas Facebook page. My links to HeartKids? I was born with a Double Inlet Left Ventricle (DILV) and Hypoplastic Right Heart (HRHS). I’ve had three major operations and many procedures over the last 39 years. My biggest op was an Atriopulmonary Fontan at age five at RCH, Melbourne. I recently had a pacemaker added to ‘the mix’. After a fairly slow start in life, I now enjoy a fairly active one, which these days includes cycling, walking and plenty of beach or park play with my family. In October 2014, I joined the Board of HeartKids as a Director, and also began working as a volunteer with the Murdoch Children’s Research Institute in an advocacy role for the ‘Fontan Registry’. As a person living with a heart condition, experiencing the regular check ups and tests, I am deeply aware of the need for support services and the value of the HeartKids branch networks. I am also aware of the ongoing stress and challenges, concerns, hopes and joys of living with a heart defect, and being a parent. I look forward to sharing some of this journey with you, and hope together we can learn how to better understand the whole life journey for people born with congenital heart defects, and for those supporting them. I look forward to meeting you all.
Tasmania News Hobart Catch-up Our Hobart group enjoyed lovely weather for their get together at the Botanical Gardens on Sunday 11 January. The group has planned a number of catch-ups for 2015 – please check the Events Calendar on our website and keep an eye on our Facebook page for updates.
Starting School When any child starts school or moves on to high school, it can be an exciting but stressful time for parents. When your child is also a heart child who has faced many challenges, it makes all these feelings more intense. Most principals and teachers are only too happy to listen to your concerns and very eager to know as much about your child’s condition as they can. You may like to refer them to the HeartKids website www.heartkidsvictas.org.au for further information and access to related sites. Heart children like to feel that they are no different from their fellow students and as far as possible, should be treated the same as their peers. However, their condition may have some impact on their schooling. If the condition is minor they will be no different from their class mates, however a major condition will have some impact. Your child’s cardiologist or paediatrician would alert you if there are any specific recommendations for your child. Please ask them to provide supporting documentation for preparation of a health care plan/First Aid action plan. Here are some suggestions for helping the transition to school: 1. We recommend that you discuss your child’s heart problems and any anticipated effect this will have on their schooling with the following people:
Cadbury Marathon On Sunday 11 January we had a HeartKids' Team entered in the Cadbury Marathon for the first time. The Cadbury Marathon is the largest marathon in Tasmania and the first one in Australia for the year. It's also the only marathon in the world that starts and finishes at a chocolate factory! We look forward to having a large presence at next year's event.
• Primary School - make an appointment with the principal and your child’s teacher.
• High school – make an appointment with your child’s year level coordinator, sports coordinator, welfare coordinator, school nurse (if applicable) and principal.
2. Speaking at a staff meeting early in the school year gives you an opportunity to explain your child’s needs and time to discuss any issues or questions staff may have. 3. If your child cannot keep up during physical education classes or is struggling to keep up with the class group on excursions that involve considerable walking, the class teacher needs to understand and make allowances for this. 4. If your child has specialist teachers, ensure they are informed of your child’s condition. 5. Complete a First Aid Action Plan, with a photo of your child, for the teacher and suggest that it be displayed in the staff room and sickbay, as well as all emergency kits. For high school students some parents suggest keeping a copy in the student’s diary and the teacher’s roll book for emergency teachers to use. 6. Ensure that your emergency contact details are always current. 7. During excursions and camps ensure a copy of your child’s Action Plan is given to the supervising teacher and accompanies the emergency kit. Please remember good communication is essential between parents and teachers and ask for support from your child’s health care professionals when necessary.
2015 Photo Request
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Congratulations and our very best wishes to all these families who have welcomed new babies in recent months. Bancilhon/Massa family is pleased to announce the arrival of HK Tyson. He was born on 14th April and has a big brother Levi. Rebecca and Tim Hill are proud to welcome their new baby boy, HK Kace, born 30th June. A little brother for HK Deacon. George and Michelle Marios were excited to announce their new son, HK Mihalis, was born on 20th September. Carlo & Ashley Bruno announced the arrival of their daughter HK Holly on 2nd October 2014. David Thornton and Nikki Burgess have announced the arrival of their daughter Ruby on 3rd October. Little sister to Stella, HK James and Max. Spiros and Nicole Zois welcomed HK Breanna, on 16th October. Little sister to George, Jason and Adelyn. Cory and Alice Hennessy announced the arrival of HK Henry on 20th October. Little brother to Ayse and Emmelyn. Greg Du Chateau and Kara Chun are proud to announce the safe arrival of Gigi on 21st October. Little sister to Zjef and Heart Angel Coco. Tim and Lauren Heath welcomed HK Isla on 1st November. Little sister to Kobe and HK Aaliyah. Justin and Imogen South welcomed their new baby boy, HK Thomas, born on 9th November. Brad and Stephanie Cole announced the arrival of HK Orlando, born 29th November. Little brother to Audrina. Susan Williams very proudly announced the birth of her baby boy, HK Blake, born on 12th December. Ian and Karen Howard have welcomed the arrival of their son Lucas on 14th December. Little brother to proud HK Logan. Alan and Sara Edwards are proud to announce the safe arrival of HK Alice, born on 26th December. Alice is the little sister of Zane and Ruby. In each edition of the magazine we like to welcome any new babies who were born in the last three months.
If you have a new addition to your family (heart child or sibling) and would like the baby’s birth announced in the magazine, please send us the details.
heart A very ‘Happy Birthday’ to all the ers mb me ily fam children and their mer! celebrating birthdays during Sum
Child Achievements Leah Askey-Doran is an amazing young woman who has overcome significant health challenges in her teenage years, challenges that would test the strongest of us. Her incredible strength and tenacity has shone through and she is now enrolled in University with plans for a professional career. We are delighted that Leah received the Ronald McDonald House $5000 Charlie Bell Scholarship to follow her career dreams. Congratulations Leah!
Samual Ellis won a ribbon in dressage, ribbon in jumping and second overall for racing only a week after surgery and riding for less than a year.
On Thursday December 11th Harry Roker was involved in Dylan Alcott’s fundraiser at the National Tennis Centre, Melbourne Park. Dylan Alcott broke the world record for the longest continuous playing of wheelchair tennis, playing for 24 consecutive hours. Dylan is the current world number 2 wheelchair tennis player and is a former Paralympic and World Champion winning wheelchair basketballer. Dylan completed the challenge to fundraise for two charities he holds very close to his heart, The Starlight Foundation and Variety - the Children's Charity, with all proceeds being split between them.
Hospital Happenings Christmas Lunch
On the Tuesday before Christmas, HeartKids held a Christmas-themed lunch for RCH in-hospital families. Special thank you to Real Estate Career Developers for funding the lunch. Our families really enjoyed the food and it was a final chance for us to farewell Amy Heafield and her family before they left for Perth.
Our Support team distributed Christmas hampers to families on Koala ward and Rosella ward on Christmas Eve. Thank you to everyone who contributed to their preparation and distribution.
Coaguchek Donation HeartKids were pleased to donate another 54 boxes of Coaguchek test strips to the Haematology Department.
RCH Morning Teas All ward, ICU and outpatient families are welcome to join us for morning tea, held on Tuesdays and Thursdays from 10:30am - 12:00pm in the Parent Lounge on the 3rd Floor.
Support at MonashHeart
Our Family Support Coordinator ic on Sherrie McDonald visits the clin 0pm Wednesdays 1.00pm - 4.0 Medicine Monash Childrenâ€™s Clinic, Special use) Ho h Centre (next to McCulloc 246 Clayton Road, Clayton
We look forward to seeing you there!
A special hello and our very best wishes to all the heart children who hav e been in hospital in the last three months.
Support Matters The New Year is always a time of reflection and setting goals. 2014 was a very busy year, having met many amazing children and families. You all inspire us with your strength and courage and our heart angels and their families are always in our thoughts. Christmas sees a lot of activity on the ward – we bring Christmas to the patients and families by decorating the ward, hosting a Christmas-themed lunch and distributing Christmas hampers and toys on Christmas Eve. We really appreciate the support of everyone who donated items to help us share the festive spirit with our families in hospital.
We are very pleased to announce that Rebecca Peters has joined our support team in the new role of Youth Support Coordinator. Rebecca will be working with our Support Manager and Youth Advisory Committee to drive a range of initiatives in order to improve the quality of support that we deliver to young people. Rebecca is pictured with one of our heart babies, Raphael Sultana, at a morning tea.
We are busy planning for 2015 so we can improve the support services that we offer. Our aim is to help through every step of the journey – from diagnosis, through childhood, the teenage years and transitioning to adult services. We are continually looking for ways to better assist our families and expand our support offerings. If you have any suggestions please email firstname.lastname@example.org. Thanks to the Staff of Glen Funerals, in conjunction with Greater Melbourne Cemeteries Trust and Friends of the Garden of Angels, our bereaved families were invited to attend Carols in the “Garden of Angels” on Saturday 6 December at Fawkner Memorial Park. This is a special event for families and friends to reflect and remember those loved ones who have passed. 2014 has seen some changes to our Support team. We said goodbye to Amy Heafield as her family moved interstate. Amy was employed as a Family Support Coordinator for five years and was an integral part of our support team. We will all miss her kind, gentle nature. We wish Amy and her family all the best for the future.
Starting school is an exciting time but it can also be a difficult period for some of our heart children and their parents. Please read our article on page 13 about School Starters for some handy hints and please don’t hesitate to contact us if we can assist. The support team has registered as a team in Super Boss Day - it’s a great excuse to have fun with our work colleagues and who could resist dressing as a superhero? Please consider joining in the fun, visit www.superbossday.org.au for details. We look forward to seeing you at a support activity soon. There are many activities planned in the coming months. Please check the Diary Dates and Coming Events sections of the magazine and the Events Calendar on our website to see what’s on. Please advise us when your child is in hospital. Due to patient privacy and confidentiality we don’t always know when you are in for appointments, procedures, surgery or emergencies. We only visit PICU (Rosella Ward) and NICU (Butterfly Ward) on request by families or referral by RCH staff. The Family Support team’s contact details are listed on page two of the magazine or you can let your nurse know that you’d like to see someone from HeartKids. We are here to help ease the burden of a stressful journey so please don’t hesitate to contact us. We look forward to providing ongoing care and support in 2015. The Family Support Team
Reflections Heart Angel Remembrance In loving memory of Harmony Lee Wyke Born 5-6-14 Passed away 24-11-14 God saw you getting tired when a cure was not to be so he wrapped his arms around you and whispered, "Come to Me." You didn't deserve what you went through, so he gave you rest. God's garden must be beautiful, he only takes the best, and when I saw you sleeping, so peaceful and free from pain, I could not wish you back, to suffer that again.
We remember these Heart Angels whose birth date or anniversary is in the Summer months.
Birth Dates Paul Livingstone 2nd December 1981 Jaime Ekberg 19th December 2005 Kristiana Thomaidis 20th December 2004 James Kelleher 21st December 1991 Lucas Stone 23rd December 2009 Jonathan McGrath 29th December 2007 Olivia Leishman-Nasserallah 2nd January 2013 Ethan Hanley 16th January 2002 Ethan Caruana 17th January 2003 Angus Puszkar 25th January 2013 Heidi Hansen 30th January 2007 Blake Gordon-Cooke 4th February 2012 Amy Dawson 11th February 2010 Hope West 12th February 2013 Andrew Lillis 13th February 2004 Eve Higgins 15th February 2013 Levi McCormack 17th February 2004 Phoebe Rolando 20th February 2009 Max Barker 21st February 2008 Stephen Buckman 26th February 1991
Thinking of You
Jesse Cotter 1st December 2008 Coco Du Chateau 17th December 2013 Jackson Walsh 28th December 2009 Frank Desensi 29th December 2009 Oscar Batrouney 30th December 2009 Arlo Donnelly 30th December 2012 Matthew Moran 15th January 2005 Angus Puszkar 25th January 2013 Daniel Kabrovski 26th January 2013 Heidi Hansen 30th January 2007 Lucas Stone 31st January 2010 Olivia Leishman-Nasserallah 3rd February 2013 Ethan Caruana 14th February 2003 Levi McCormack 14th February 2014 Georgia Morrison 17th February 2000 Andrew Lillis 19th February 2004 Mary O'Keefe 22nd February 2006 Kristiana Thomaidis 28th February 2009
Our thoughts and prayers are with the families and friends of all Heart Angels in their time of loss.
Heartfelt Thanks... Hoffy's Rainbow Run Julie Hoffmann organised a Rainbow Fun Run at Cardinia Reservoir on Sunday 26 October raising $4,250 for HeartKids. Over 400 people participated in the event, running/jogging/ walking either the 5km or 10km course. Before the run started John Trager sang his beautiful song "Let your angel fly" which he wrote for heart angel Blake. Participants arrived squeaky clean but, after running around the course and being hit with clouds of coloured powder, by the end of the run their clothing was covered in a rainbow of colours. We really appreciate the dedication of Julie and her team - they have been fantastic supporters of HeartKids.
Jay Coady Bike Ride On 8 November Jay Coady and his team undertook a 24 hour stationary bike ride at Burwood One Shopping Centre. Weâ€™d like to extend a huge thank you to all the riders and support crew who rattled collection tins, massaged riders, played music and movies, Burwood One Shopping Centre (a great venue) and ReCreation Burwood East Health Club for the use of their spin bikes. They raised $6619.70 for HeartKids.
...for Your Support Broadmeadows Car & Bike Show We organised our 6th HeartKids Victoria Car & Bike show on November 16th and even though the weather was not kind to us leading up to the day and on the morning of the fundraiser, we still had a fantastic day with many generous people helping to raise money.
Through entry fees, raffle, silent auctions, cakes, coffee, sausage and souvlaki sales, we were able to raise $9523.40. Considering the weather, we think that this is a great result and reflective of the support from family, friends, sponsors and the community. Luisa and Adam Michielin
"Off the Cuff" The second HeartKids’ Off the Cuff Speakers luncheon was held at The Kelvin Club in November. Continuing our theme of hosting speakers whose stories may not always be known to many, we were thrilled to have Derryn Hinch as our guest. Derryn was “interviewed” by good friend and media and communications professional Doug Christie, who assisted Derryn to recant his amazing life as a journalist and reporter, many times at the forefront of the world’s leading news stories. Those in attendance heard of Derryn’s early years and how as a young reporter based in the US he found himself at the funeral of Martin Luther King Jnr, and a few months later at the funeral of Robert Kennedy. Derryn explained the feeling at witnessing Apollo 10’s historic blast off to the moon at Cape Canaveral, whilst then talking about the tension he witnessed at the same venue as NASA tried to get those on Apollo 13 back to earth. We again thank Brett and the team at Jet Couriers for sponsoring this lunch as they did with Brian Waldron in June. We were also thrilled at the response from those in the room who dug deep to fund this year’s Christmas hamper programme, and in particular both Graeme Giddings and Paul Herbert who went way beyond our ask to underwrite the entire cost. We are looking forward to continuing this series in 2015.
Acknowledging... Cuppa for HeartKids Thank you to all those that participated in this year’s Cuppa campaign. We are pleased to announce that we had over 30 registered fundraisers host a Cuppa event this year! We are very grateful to all those involved and very pleased to announce that in Victoria alone we raised over $11,000! Thank you all for your support!
Congratulations to Ashlee Martin of East Maitland, NSW, for being the highest fundraiser in the 2014 Cuppa for HeartKids campaign. Ashlee raised a total of $6,780 by hosting a joint event in the Hunter Valley in September - a High Tea for the ladies and a Barefoot Bowls Day for the gents. Money was raised through tickets sales, raffles and donations. Ashlee’s heart child Harper was born in Westmead Children’s Hospital 2 ½ years ago. She is extremely grateful for the support that she has received from HeartKids and wants to give back in any way that she can, to ensure that other families receive the care and support that she knows is so important.
Ron & Kath raised $1043.10 for HeartKids from their wonderful Christmas lights display in Cobram.
40th Birthday Celebrations This spectacular 80's themed cake was made by Cake Envy for a very close friend's 40th birthday. What made this cake (and event) even more special is that instead of requesting presents, Anthony Theodorou requested donations for Heartkids Victoria/Tasmania as Anthony and his wife Debra had been very touched by Portia Grimbos who passed of a heart condition at 40 days old. They raised $5,120!!! What a tremendous effort and such a selfless act of generosity – thank you Anthony & Debra.
Open Gardens On 18 and 19 October Jenny Bennett from The Bee Garden, Sale, held a fundraising event at Open Gardens Australia. Over 300 visitors enjoyed looking at the stunning gardens, purchasing homemade jam and beautiful flowers. The event raised over $2100 for HeartKids in memory of her grandsons, Jack & Will.
...Special Efforts Kiwanis Sponsored... Broadmeadows Shopping Centre's Super Support Santa arrived in superhero style in a sleigh pulled by huskies at Broadmeadows Shopping Centre on Saturday 22 November with a cast of six amazing superheroes, local heart children and their siblings, accompanied by a marching band! It was great to see many in the crowd embrace the superhero theme as they welcomed Santa to the centre. Children enjoyed the opportunity to get their photo taken with their favourite superheroes, building their own Stufflers teddy bear and the exclusive screening of â€œHow To Train Your Dragon 2" at Hoyts Broadmeadows. Proceeds from the photos and movie were kindly donated to HeartKids. HeartKids volunteers were kept busy wrapping presents and selling merchandise at the Centre throughout December. We thank Broadmeadows Shopping Centre for their wonderful support with these great activities raising $5500 and look forward to working with them in the future.
Thank you for your recent gifts... Michielin, Adam & Luisa
Grand Lodge of Victoria
ADNT Pty Ltd
Ample CafĂŠ and Bar
Real Estate Career Developers
Biggin & Scott Pty Ltd
Renfrew, Rod & Kat
Broadmeadows Shopping Centre
Chinese Property Media Group
Rotary Club of Greenvale
Kiwanis Club of Deniliquin Inc.
St Michael's Grammar School
Magistrates' Court of Victoria
Tang, Peter & Joyce
Doncaster Secondary College
McLennan Kiwanis Club
TasTAFE Client Services South
Melbourne Shrine Club
Featherston, Kevin & Beryl
The Art Cabriolet
The Australian Cake Angels Network
Floreancig Smith Pty Ltd
The Glen Life Group
Geelong FX-HZ Holden Car Club
Noll , Rebekah
Z Transport Group
Memorial Donations for Audrey Britnell
Financial contributions over $500 are acknowledged in this column.
Quinane Family Donation The Quinane family from Cobram are wonderful supporters of HeartKids. David, father of HK Dooley, presented us with a cheque for $950 which he raised by selling drinks and icy poles at work.
Welcome and thank you to new supporters, the Chinese Age.
Sponsors and Supporters Victorian Partners:
National Supporters: Founding Sponsor Principal Partner Major Partners
Foundation Partner Corporate Supporters
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MELBOURNE METRO BRANCHES Bayside Cassie Clarke 0499 741 116 email@example.com East Bentleigh Maggie Stavrou (03) 9563 7133 firstname.lastname@example.org Bundoora Jessica Shakespeare 0409 165 004 email@example.com Dandenong Lucy (Fatima) Hussain 0430 738 820 firstname.lastname@example.org Melton Lauren Tyrrell 0424 594 757 email@example.com Mornington Simone Munro 0439 033 194 firstname.lastname@example.org Pakenham Joanne Arrowsmith (03) 5967 7083 email@example.com Point Cook Jonathan Mackley 0411 114 008 firstname.lastname@example.org Tullamarine Adele Luca 0408 312 662 email@example.com Wantirna Janita Felici 0422 976 024 firstname.lastname@example.org REGIONAL BRANCHES VICTORIA Albury/Wodonga Cathie Kelly 0417 049 341 email@example.com
HeartKids Vic Inc CONTACT US PO Box 803 Parkville Victoria 3052 P: (03) 9329 0446 E: firstname.lastname@example.org
ARN: A0021470B ABN: 16 336 986 918 VISIT US Suite 33 204 – 218 Dryburgh Street North Melbourne 3051
Facebook: HeartKids Victoria/Tasmania Twitter: @HeartKidsVicTas Instagram: heartkidsvictas
Contact Details Bairnsdale Caroline Foard 0438 928 821 email@example.com Ballarat Rohini Dobell & Alan Smith 0407 851 648 firstname.lastname@example.org Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 email@example.com Cobram Bianca Quinane 0419 674 408 firstname.lastname@example.org Echuca/Moama Tracey Hard 0438 962 056 email@example.com Geelong Libby Gibson (03) 5250 2439 0411 057 905 firstname.lastname@example.org Horsham Gaynor Baker (03) 5384 2280 email@example.com Kyneton Lauren Roberts (03) 5427 2696 firstname.lastname@example.org Mildura Fiona Dowie 0438 396 790 email@example.com Portland Kerry Sluggett (03) 5523 2503 0418 312 320 firstname.lastname@example.org Shepparton Cheryl Alexander (03) 5825 4005 email@example.com South Gippsland Kerrie Disney (03) 5182 5531 0409 950 608 firstname.lastname@example.org
EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 email@example.com hearts4heart - Support for Adults with Heart Disease Tanya Hall 0426 240 636 firstname.lastname@example.org hearts4heart.net.au Wangaratta HYPOPLASTIC LEFT HEART Lisa Dekeling 0421 655 636 SYNDROME & Shane Hack 0488 221 184 & SIMILAR CONDITIONS om.au email@example.com www.hearts-of-hope.org Wonthaggi Leanne Amarant (Victoria) 863 702 Erin Howell 0431 (03) 5358 2945 firstname.lastname@example.org Leanneamarant@hotmail.com Csaba Ovari (Tasmania) TASMANIA (03) 6229 8169 ort Devonp Burnie/ email@example.com Claire Gluyas 0408 351 661 KABUKI SYNDROME firstname.lastname@example.org Stacey McKiernan (03) 5275 1542 Hobart email@example.com Paul Hyland (03) 6247 8435 Website: www.sakks.org 504 0418 561 KAWASAKI DISEASE firstname.lastname@example.org Shirley Mates (03) 9894 1257 ton Launces email@example.com Kylie Smith (03) 6393 6240 Website: www.kdfoundation.org.au 0448 983 587 rg.au rtkids.o LONG QT SYNDROME (LQTS) kylie.smith@hea Sherrie McDonald 0431 544 510 firstname.lastname@example.org SPECIAL INTEREST GROUPS www.sads.org.au or 22q11 The VCFS and 22q11 Foundation www.sads.org.uk/ MULTIPLE BIRTHS Maria Kamper April Schubert 0407 551 967 www.vcfs22q.org.au (02) 6056 6448 EMAIL S BEREAVED FAMILIE email@example.com SUPPORT MUSLIM FAMILIES http://www.hearts-of-hope.org/ Lucy (Fatima) Hussain support/bereavment/intro.htm 0430 738 820 CARDIOMYOPATHY ASSN of firstname.lastname@example.org AUST. OVER 18’s Website: www.cmaa.org.au/ Erin Cervelli (03) 9513 9030 OME DOWN SYNDR PACEMAKERS Sam Jackson 0439 360 035 email@example.com Mandy Tichelaar (03) 9728 6984
Stawell Leanne Amarant (03) 5358 2945 or 0419 864 412 firstname.lastname@example.org Traralgon Chrissy Ades 0400 857 813 email@example.com