Quarterly Magazine for Victoria and Tasmania
Volume 25 Issue 2
* HeartKids Cup * The Block Triple Threat * 25th Anniversary Gala
Matters of the Heart -
Chief Executive Officer This year marks 25 years of HeartKids here in Victoria, although the impact was well and truly in place before this formalisation.
At our Gala this year we, along with over 200 guests, reflected and celebrated those who found a common need to help those families and children that were about to go through, or were going through, similar circumstances. Through this group of 'foundation members’, who had the foresight and drive to team together, countless families and children have derived a benefit over the last quarter of a century. The legacy of those individuals is profound and will continue to be felt for a long, long time to come. Apart from providing a platform to express our collective gratitude at the Gala, we also launched Foundation 25, a regular giving programme that will directly assist with the day to day support that we provide. Stay tuned to our website and eNewsletters for more details. Our particular thanks go to Anita and John at Grimbos Building Surveyors for their continued generous involvement as our Principal Partner of the Gala. In addition to this very special celebration there have been a number of activities worth noting of late, and coming up, which you will see throughout this edition. Significant amongst these was the HeartKids Cup football match between North Melbourne and the Sydney Swans. The result will see the Cup return to Sydney next year but in terms of this year, our gratitude goes to the support team at North Melbourne Football Club and for everything they did to make the match a real celebration for HeartKids. In particular, we pass on our sincere appreciation to both Glenn Archer and Jarrad McVeigh (both HeartKids Ambassadors) for their support of the occasion. Warm regards Norm Norm Hutton CEO, HeartKids Vic/Tas
Please note our 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 Erin Cervelli Jonathan Mackley David Cervelli Paul Lunardi
HeartKids Vic Inc Employees * Chief Executive Officer Norm Hutton 0409 874 452 firstname.lastname@example.org * Support Manager Tracy Stanley 0478 091 773 email@example.com * Family Support Coordinator Sherrie McDonald 0431 544 510 firstname.lastname@example.org * Youth Support Coordinator Rebecca Peters email@example.com * Member Activities Coordinator Lynette McCoullough firstname.lastname@example.org * Membership/Magazine Coordinator Margaret Patullo email@example.com * Development Manager Sandra Zlatanovski firstname.lastname@example.org * Operations and Administration Coordinator Paola Rossi email@example.com * Corporate Relationship Coordinator Luisa Kenos 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
ball Club visit Front cover: North Melbourne Foot ith Photo courtesy of: Joanne Arrowsm mation for this edition. infor and os phot sent Thanks to all who to: email@example.com send Contributions are always welcome 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 'Off the Cuff' Speaker Luncheon series Date/Time: Friday 31 July, 1.00 for 1.30pm Venue: The Kelvin Club, 14-30 Melbourne Place, Melbourne Guest Speaker: Jerry Grayson, the youngest person accepted into the Royal Navy as a Search and Rescue helicopter pilot and by age 25, the most decorated Pilot in the Royal Navy’s peacetime history. Jerry went on to establish Helifilms that has performed aerial stunt work for a number of major Hollywood blockbusters including James Bond. He has recently launched his book “Rescue Pilot” to tell his story. Limited tickets available @ $95pp: phone (03) 9329 0446, 0409 874 452 or email Norm: firstname.lastname@example.org The 'Off the Cuff' luncheons are kindly sponsored by Jet Couriers.
Cuppa for HeartKids 2015 Hosting a Cuppa for Heartkids is a fun and easy way to help raise money for Heartkids. Invite your friends and family to join you for a tea party and make a real difference in the fight against Childhood Heart Disease. Running throughout August and September, Cuppa for HeartKids is a national community fundraising campaign to help fund essential support and life-saving research for children with heart disease. If you have not already done so, register your event at: www.cuppaforheartkids.org.au
Adult CHD Catch Up Date: Thursday 13 August Location: Cornish Arms Hotel - 163A Sydney Rd, Brunswick Fancy filling a Thursday night with some Trivia fun & re-connect or meet other adults with CHD? Then come down for a casual meal and a few rounds of trivia. Trivia starts @ 7:30pm but if you want to have dinner prior please arrive at 6:00pm! RSVP: 11 August, email@example.com ** Please note you must be over 18 to attend
Candlebark Farm Family Camp, Healesville Dates: Weekend Friday 18 to Sunday 20 September Venue: 531 Healesville-Kooweerup Road, Healesville This camp is generously sponsored by the Kiwanis Clubs of Division 6 so there is no cost for accommodation and most meals. Accommodation is 6 or 8 bed rooms with bunk beds – all with their own shower and toilet. Child care is available on the Saturday while older children undertake outdoor activities. Priority is given to families who have not attended before and places are limited to accommodate 14 families. Please express an interest in attending this camp by registering immediate family members only on www.trybooking.com/HYTY by RSVP 25th August. Offers of a place will be made by 1st September.
Fontan Education Day Date: Sunday 18 October 2015 Venue: L orimer Dods Lecture Theatre, Education Centre (Level 4), The Children’s Hospital, Westmead, Sydney Times: Registration: 8:30am; Sessions: 9am -5:00pm Cost: Adult: $50pp; Youth (13-18 years): $25pp Bookings: Ticket sales close 1pm Friday, 16 October 2015 https://www.mycause.com.au/events/fontaneducationday or telephone: 0431 659 911
For more information, check Facebook and our website Events Calendar: http://heartkidsvictas.org.au/events
In This Issue
Coming Events HeartKids 25th Anniversary Gala The Block, NMFC Visit HeartKids Cup 2015 Xavi Matija's story Fundraising Events Branch News / Tasmania News Congratulations / Heart Child News Support Matters Hospital Happenings Transition and Adolescent News Society of Adolescent Health and Medicine Conference 18-19 Reflections 20 National Volunteer Week 21 Enjoying Member Activities 22 Donation Acknowledgements 23 Sponsors and Supporters
3 4-5 6 7 8-9 10-11 12 13 14 15 16 17
Box Hill Minature Train Day Date/Time: Saturday 31 October, 11am – 1.30pm Venue: Corner Elgar & Belmore Roads, Box Hill North Families who have a heart child or heart angel are invited to attend this fun day out, sponsored by the Kiwanis Club of Waverley. 11am–12noon free sausage sizzle lunch, 12noon-1.30pm free train rides. Please book on www.trybooking.com/IDXV Register immediate family members only please.
Biggin & Scott Oaks Day Luncheon Date: Thursday 5 November Venue: The Royal South Yarra Lawn Tennis Club Our wonderful supporters Biggin & Scott Corporate are holding an Oaks Day Luncheon fundraiser for HeartKids. The day will include sweeps, raffles, fashions on the field competition and more. Please book your tickets: www.trybooking.com/139854
FunFlight Date/Time: Sunday 8 November, 10am – 2pm Families are invited to attend this free event, sponsored and coordinated by Funflight. Families will be treated to a free flight and lunch. Child friendly activities might also be organised. Aero clubs participating may include (to be confirmed): Victoria - Barwon Heads, Bendigo, Echuca, Hamilton, Horsham, Kyneton, Latrobe Valley, Lilydale, Moorabbin, Peninsula. Tasmania - Hobart and Launceston. You will need to register directly with FunFlight at the end of August. For now, please express interest in attending this event by registering on www.trybooking.com/IDYB and we will send you FunFlight registration details when available.
Christmas Party Save the date: Sunday 13 December Booking details will be in the Spring magazine.
HeartKids 25th Anniversary...
...Celebration Gala Rarely does an opportunity arise where you have the pleasure to acknowledge and thank people who have made a genuine legacy that has assisted so many people, and continues to do so. HeartKids had this privilege at our annual Gala held at the RACV City Club on June 27. The night was set up with the theme “Stars of the Silver Screen” in honour of this being our “Silver” anniversary. It was truly an evening to enjoy quality entertainment...which started as soon as guests arrived, with a pianist, Robyn Womersley, playing classic movie compositions whilst our special glasses of champagne were being sipped by those hoping to win a magnificent $3,500 pendant courtesy of Ian Sharp Jewellers. Once the doors opened our guests moved into the function area and soon were being blown away by the opening performance by our MC for the evening, Josh Piterman. Josh sang three songs including a spine chilling version of Music of the Night. He then proceeded to go through HeartKids history which included a reminder of what was happening in the world 25 years ago. The occasion also allowed for the launch of a new regular giving programme, Foundation 25, which was presented by heart child Flynne Tytherleigh. Gala Chair David Cervelli then called upon all Founding Members who were in attendance...courtesy of our Principal Sponsor for the evening, Grimbos Building Surveyors, who again displayed their support of HeartKids and this event. An amazing cake was especially created for the occasion by La-De-Da Cakes and all Founding Members joined in the cake-cutting. Carol Bosward, HeartKids' original President, spoke about those early years and the motivation for those who, in the 1980’s, formed a group which ultimately became HeartKids 25 years ago. Carol's reflections were followed by a montage set to the music “What a Wonderful World” and then Michelle Bodinnar provided a heart warming account of her family’s experience with their daughter Maisy and the role HeartKids played in their journey. After those formalities, guests were invited to make a pledge to our work, buy a lucky balloon and bid on our auction items - special thanks to auctioneer Mark Verocchi from Nelson Alexander for his great work. We are delighted to announce the fundraising outcome exceeded $38,000. Once all that was done, the festivities really began. HeartKids was extremely fortunate to have Mike Brady put together an all-star band to perform just for the occasion. Mike, along with Lisa Edwards and “Coxy” on drums were joined by John Grant, Tony Naylor and Roger McLachlan to absolutely “rock the house”. Besides Grimbos Building Surveyors, HeartKids would also like to acknowledge our other major supporters of the event in Nelson Alexander, Real Estate Career Developers, Canny Builders, Natural Family Photography, Amnet Group and DP Plumbing together with our major Corporate Supporter, Biggin and Scott. Special thanks to all our volunteers, including ANZ, National Australia Bank, Bendigo Bank, People’s Choice Credit Union staff, HeartKids family and volunteer members, as well as entrants from this year’s Mrs Australia Globe who did such a great job on the night.
Our Friends Provide.... The Block Triple Threat Our wonderful supporters, Biggin and Scott Real Estate, took part in ‘The Block Triple Threat’. Russell Cambridge was once again involved in the series as the auctioneer for Tim & Anastasia’s apartment. HeartKids had a Lolly Shop themed marquee at both Open for Inspection days – raising awareness and funds while people queued to view the apartments.
Biggin and Scott generously donated their commission to HeartKids. A massive thank you to Biggin and Scott, Russell Cambridge, Tim & Anastasia and our volunteers who manned the marquee.
Visit to North Melbourne Football Club In the lead up to the HeartKids Cup, we had 16 very excited children who stormed onto the Arden Street oval on 27 May during a visit to North Melbourne Football Club. With thanks to North Melbourne Football Club the children had a fantastic visit to the club enjoying activities with the Huddle team, eating lunch while watching the pre-game training session, meet and greet and photos with the North Melbourne team, kick to kick and goal practise with some players and they all received a NMFC gift bag. It was a wonderful experience for the children (and parents). We are very grateful to the North Melbourne Football Club for their hospitality.
...Amazing Awareness HeartKids Cup During round 11 of the AFL season, on Saturday 13 June, the Sydney Swans and North Melbourne played for the HeartKids Cup at Etihad Stadium. The HeartKids Cup was launched in 2012 by Swans co-captain, Jarrad McVeigh, and North Melbourne great, Glenn Archer, as both have been personally affected by childhood heart disease. This year was the fourth running of the HeartKids Cup. Our volunteers rattled donation tins outside Etihad Stadium before the match, raising $1222.80. We had a large HeartKids presence with many families attending thanks to North Melbourne Football Club who generously donated tickets. It was wonderful to see so many HeartKids logos on t-shirts, hats and signs. Significant awareness was raised through LED signage at the stadium, half time giant screen interviews, the crowd making heart-shaped signs to support HeartKids and the post-match trophy presentation shown on television coverage of the match. The Swans withstood a second-half challenge from North Melbourne to win an exciting match by 16 points. We wish to thank the Sydney Swans and North Melbourne Football clubs, Jarrad McVeigh and Glenn Archer for agreeing to support us in this way and making the HeartKids Cup an annual event.
Xavi Matija's Story.... The Birth – 24/06/2014 On a stormy Mornington evening, Xavi Matija van der Ende was born at 38.5 weeks at 5.36pm weighing 3540 grams (7.8lb). At the time he was known as baby boy Selzer (mum & dad hadn’t agreed on a name yet). Born via emergency C-section due to Oligohydramnios (a condition in pregnancy characterised by a deficiency of amniotic fluid), Xavi was born in a small private hospital in Mornington, Victoria. Once born, he was quite blue, very floppy and his oxygen sats were poor along with low APGAR scores. The attending paediatrician suspected ‘Transposition of the Great Arteries’ (TGA) and rushed him to the hospital’s special care nursery. There he was intubated for oxygen therapy. While the oxygen helped, this hospital had a low care/low risk maternity ward that was not equipped to deal with complex conditions like this. Soon after NETS (The Newborn & paediatric Emergency Transport Service) were called to organise a transfer to The Royal Children’s Hospital and the drug Prostin (prostaglandin)
was rushed to Mornington from a local public hospital as it was not stocked on site. The Prostin was administered to help prevent the Ductus Arteriosus (a fetal blood vessel that connects the left pulmonary artery with the descending aorta and that normally closes at birth) from closing. The paediatrician, along with her team worked tirelessly to keep Xavi alive until NETS arrived and readied him for transport to the RCH. Xavi left Mornington in an ambulance with two paramedics at approximately 9.30pm, 3 hours after coming into the world. Mum said goodbye from a hospital stretcher before he was rushed out of sight.
First Night at RCH On arrival at RCH Xavi’s oxygen levels were at a poor level of 40-50%. An echocardiogram soon confirmed the diagnosis was ‘Transposition of the Great Arteries with intact ventricular septum’. Meanwhile, whilst his mother had to remain in Mornington, his father, who had followed the ambulance to the hospital, was attempting to navigate the Children’s Hospital and find out what was going on. The Prostin therapy had proven ineffective and Xavi’s condition deteriorated rapidly. His oxygen levels had now fallen well below 30%. An emergency Balloon Atrial Septostomy (BAS) was performed. If successful, this balloon would keep the Ductus Arteriosus open, promoting the mixture of blood and oxygen his life required. The operation was attempted through the right side of the groin…It failed. Next attempt was through the left side of the groin…This again, also failed. Desperate, the cardiologist tried one last time through the umbilicus…And it was a success! The duct in his tiny heart opened and blood mixed with oxygen. The blood oxygen levels immediately jumped to the 70’s. At last he was stable. Oxygen levels at this stage could not reach 100% until the arteries were switched back to their normal position. At approximately 5am Xavi’s father was admitted to the room in the RCH PICU ward where Xavi lay on a tiny bed covered head to foot in tubes. The RCH Journey While Xavi lay in his tiny bed in Parkville, mum lay in her own bed in Mornington, about 80km away, clutching the white, size four-zero jumpsuit he was supposed to have been wearing. Listening to all the other babies on the ward, she was alone, devastated and worried beyond belief. In the morning the nurses quickly realised she was going to the Children’s that day one way or another - even if she had to walk there in her hospital gown. They organised a packed lunch, wheelchair and pain medication for the C-section wound and helped her into a waiting car which took her across to Parkville. Here the family was reunited and mum and dad were together able to decide on a name for their beautiful son. Xavi’s balloon therapy was no more than a band aid and the hospital staff explained the lifesaving operation he required. Open heart surgery. The surgeon needed to cut open the baby’s chest and switch the aorta and pulmonary arteries back to where they should be. This required a heart bypass and the family was advised the operation can take anywhere up to 8 hours. In the meantime however they had to wait. Upcoming surgeries at the RCH are triaged daily and with Xavi now in a stable condition his surgery was placed in the queue. After a couple of days in the PICU ward he was
....Transposition of the Great Arteries released to the Cardiac ward to continue building strength and to await surgery. Feeding was initiated and he enjoyed his first meal through a syringe, but quickly deteriorated again with continued feeds. Two MET calls to his room were placed within a couple of hours and he was moved back to intensive care. The next few days were extremely tense. The doctors were worried he may have had Necrotising Enterocolitis (NEC), a serious condition that would have left him unable to undergo the heart operation. He was also thought to have had Coarctation of the Aorta, which would require an additional surgical correction while in theatre. It was touch and go every minute of every day with no-one knowing on a day to day basis whether the operation would be done that day, or even at all.
Finally, day 7, the 1st of July Xavi was cleared of these concerns and was able to have his operation. The whole process, which lasted 5 hours including approximately 2 hours on the heart bypass machines, was a complete success. Xavi survived and recovered remarkably well. He learned to breast feed, learned to cry (crying had been restricted due to the tubes down his throat on his vocal cords) and mum and dad learnt what it meant to be parents of a newborn. The family was home in just 11 days post op, completely in love and proud as punch of Xavi, their little heart warrior.
Meanwhile in reflection, we really have had an amazing and positive outcome. And, it is easy to think of all what ifs and buts, however we do appreciate that we’re very fortunate to have the medical care that was provided and is available to us today. We are extremely grateful and forever thankful for everything everyone has done for us during this trying time, in particular, the staff at The Royal Children’s Hospital. Special mentions to A/Prof Andrew Davis (cardiologist), A/Prof Christian Brizard (surgeon), Dr Ylva Andersson (paediatrician), Dr Jolyon Ford (the obstetrician). And of course, the ongoing support from HeartKids. Written by Xavi's parents, Maxine & Matthew
Post Hospital It’s been quite difficult to deal with knowing Xavi’s condition wasn’t picked up during the 18-20 week fetal anomaly scan as it generally can be. Had we been prepared he would have been born at the Royal Women’s or another near-by equipped hospital. Xavi is now 11 months old and while a beautiful, fun loving child, his development requires continuous follow ups and he is currently being treated through Early Childhood Intervention Services. He is going really well and everyone is happy with his current progress. We hope for his sake this pattern never breaks.
A Commitment to... Makayla Cook's Charity Golf Day It was another successful day at Makayla Cook's Charity Golf Day held on Good Friday at the Drouin Golf & Country Club. The three person Ambrose event followed by a raffle, auction and live music is held in memory of Makayla Sue Cook who was born on 18 June 2012
Saturday Night Heart Fever On Saturday May 16, Keilor and Tullamarine Rotary Clubs had their Annual Dinner Dance at Ultima Function Centre, where they raised an amazing $35,000. The night was a fantastic success, not just in terms of fundraising. Guests enjoyed a beautiful three-course meal while being entertained by the band ‘VIBE’. People danced into the night and were also fortunate enough to have television personality George Donikian hosting the event. Jonathon Mackley, the guest speaker, is an adult with CHD and is now a Board Member of HeartKids Victoria; his message was both moving and inspirational. Overall it was a magnificent night, and we would like to thank both the Keilor and Tullamarine Rotary Clubs for their tremendous efforts in organising this fundraising event every year. We would also like to thank Ultima Function Centre for their continued support, and for making this a wonderful night for all involved. Very special thanks to the Committee Members: • John Cendo • Anthony Flapper (Chair) • Tom Barber • Conrad D’Cunha • Leon Lewi • Joseph De Marco • Michael Schiavello • Peter Boudville A massive thank you also goes out to The Rotary Club’s major sponsors for this event, which include: • Nelson Alexander Real Estate – Milo Rasinac, Essendon and Ascot Vale • Honan Insurance Brokers • Mirabella International • New World Distillery • Mitre 10 • Artistic Signs Written by Christina Georgiades
with Hypoplastic Left Heart Syndrome. Makayla very sadly passed away at 33 days old. This year, $19,500 was raised which brings the total over the past three years to $82,500. Jackie and Leon Cook are very appreciative of all the support provided by family, friends and the local community.
...Making a Difference 'Off the Cuff' Luncheon In March we conducted the third in our “speaker’s series luncheons” with our guest Tony Currie, who told a very personal story about his career in the Victorian Special Operations Group Anti Terrorism Unit. Tony took our guests through numerous examples of his experience at the leading edge of law enforcement and recounted several encounters which brought home the high risk that members of this group face in protect ing the public and bringing offenders to justice. In July we will continue the trend of having guest speakers who are not only of high calibre but also are unique and provide a story that take people on a journey few can imagine experiencing. Jerry Grayson is definitely such a person. The youngest person ever to be accepted into the Royal Navy as a Search and Rescue helicopter pilot at age 17 and by 25, he was the most decora ted Pilot in the Royal Navy’s peacetime history. Jerry went on to establish Helifilms that has performed aerial stunt work for a number of major Hollywood blockbusters including James Bond. He has also recently launched his book “Rescue Pilot” to tell his story. Our appreciation to Jet Couriers who have confirmed their sponso rship of our 2015/16 series.
Golf Day In April the HeartKids Golf Day was held at the beautiful Sandhurst Country Club. Apart from having a lot of fun the day also enabled a group of Heart Kid dads to participate courtesy of a fundraising sponsorship at the March 'Off the Cuff'. We also welcomed the team from Precision Mail who were quick to sign up on the back of their participation in Super Boss Day. Whilst the day was more about the social elements of golf, which was reflected in the scoring, we did however have a winning team on the day which was Chris Palmer and the Southern Cross Computer team. Speaking of Chris, our thanks go to both him and Southern Cross Computers for their continued sponsorship of this event. Special thanks to volunteer Matthew Ebbage and National Australia Bank staff for helping to make the Golf day a success.
Brave Heart Bear's Big Adventure In May two planes took off from Lilydale and Essendon Airports on a five day Outback Adventure raising funds for HeartKids. Created by Graeme Giddings and Andrew Henderson the group adopted Brave Heart as their mascot. After visiting such places as the northern Flinders Ranges and Birdsville they raised almost $10,000 and committed to making it bigger and better next year. And Brave Heart Bear is again invited along!
Branch News HeartKids has a number of Branches around Victoria and Tasmania. You are welcome to contact your local Branch Coordinator to introduce yourself so the Coordinator can keep you informed about activities in your area. Please see contact details on the back page of this magazine. Follow us on Facebook or watch the Events Calendar on our website for upcoming Catch-up dates: http://heartkidsvictas.org.au/events/
Branch Catch Up Days
Tasmanian News Coming Events Cuppa for HeartKids Come and enjoy a cuppa along with 'afternoon tea' to help raise money for HeartKids. Venue: Lovely Little Forth Church (next to Forth Pub) Date: 2nd August Time: 2pm - 4pm Adults $10 each & Children $5 each. RSVP by Monday 27th July by messaging Claire Margaret Gluyas or Larnie Gale or by phoning 0438 170 301
FunFlight Hobart and Launceston (to be confirmed) - details on page 3
Devonport Catch up
Top: Lots of fun at the Bundoora Disco Middle: Photos from the July lunch & movie day in Geelong Below: Geelong Branch enjoyed an Easter Catch up in April, with a BBQ, lots of craft activities, egg and spoon races and an Easter egg hunt. Special thanks to the BBQ volunteers, Wayne and Mick, and to the Carney family for their kind donation to the day's activities.
Razzamatazz at Burnie
Heart Child News
Congratulations and our very best wishes to all these
families who have welcomed new babies in recent months. Tim and Petra McNamara announced that their baby girl (another one), Francesca Suzanne, arrived healthy and
happy on 21st January 2015. Little sister to Miranda and HK Siobhan.
Owen and Tanya Budge are excited to announce the safe
arrival of HK Max on 27th January 2015. Damian and Kellie Parsons are proud to announce the safe arrival of HK Liam on 10th February. Little brother to Lily (dec) and Toby. Matthew and Kimberley Jaskolski are excited to welcome HK Adelina to the family on 19th February. Little sister to Ellie. Debra Libreri is excited to announce the safe arrival of HK Jaxsen on 20th February. Ryan and Lauren Curtain are proud to announce the arrival of HK Madison on 21st February. Tom and Annie Christo are proud to announce the safe arrival of HK Zoe, born on 16th April. A little sister for Jamison. Gordon and Courtney McSephney's family are excited to announce the arrival of HK Archer on 23rd April. Little brother to Leo. Aaron and Stephanie Skiller are excited to announce the arrival of HK Chelsea, born on 27th April. Joshua and Rhiannon Goonan have welcomed HK Noah to the family. Born 6th May. Little brother to Taneisha. Benjamin and Emily Neumeister are delighted to welcome HK Patrick on 8th May. Mathew & Kirsten Pini are excited to announce the arrival of new baby Jaxson on 12th May. A little brother for HK Maxwell and Patrick. Blair and Kerry Reynolds are excited to announce the birth of HK Jay on 31st May. Chris and Clare Burdon are pleased to announce the birth of HK Grace on 14th June. Little sister to Charlotte. Shaun Hopper and Kimberley Bielecki proudly announced the birth of their daughter HK Delilah Jade on 18th June. Nyree, Jonathan (ACHD) and Juliet Mackley are delighted to welcome the newest member of their family, Evelyn Rose, who arrived on 22nd June. All well. Rob and Jenna Fantauzzo are proud to announce the arrival of HK Milla on 8th July. Little sister to Iyla.
In each edition of the magazine we like to welcome any new babies who were born recently. 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.
A very ‘Happy Birthday’ to all the heart children and their family members celebrating birthdays during Win ter!
Balin (above, right) with a team-mate and also pictured as catcher Earlier this year Balin O’Callaghan played in the State Little League Baseball Championships representing the Mariners (Southern part of Melbourne). They went through the tournament undefeated, winning all six games. Balin was then selected to represent the State at the 2015 Australian Little League Championships (ALLC) held in Lismore, NSW, in June.
Alaska & Ellie Mitchell
Alaska Dowie (left) and Ellie Gibson (right) played Centre against each other in a netball match. They both played an awesome game and no one would have guessed that they are heart children!
Mitchell's family are very proud of him for coming second in backstroke at Moomba swim school.
Thomas Federico is taking part in the RCH research project: Exercise induced hypertension in children following coarctation repair. He is having a great time participating in the project.
Support Matters Welcome to the Winter Edition of our magazine. The winter chills are here and it’s definitely the weather to be indoors sharing warm cups of soup, hot chocolate, coffee and tea and whilst you are at it, you could share it with your family, friends, work colleagues or community and support HeartKids Victoria/Tasmania by hosting a Cuppa for HeartKids! The Cuppa for HeartKids program is running again in August and September - full details can be found at www.cuppaforheartkids.org.au We would like to encourage you to get behind this program and help us raise much-needed funds for our Family Support Programs.
Our team is busy planning activities for the remainder of the year. One of our key focus areas is to better support teens and young adults with CHD and we’re pleased that with the formation of our Youth Advisory Committee and the appointment of Rebecca Peters as Youth Support Coordinator, we are making steady progress. Our Youth Advisory Committee held a Pitch Perfect 2 event in May at HOYTS Broadmeadows (photo above); we organised tickets for young people attending The Alfred Transplant Clinic to attend The Project in June. We have a catch up planned for over 18s on 13 August and are busy planning the Tween
Camp to be held 13-15 November. For the latest information on upcoming activities and events please check the Events Calendar on our website www.heartkidsvictas.org.au We hope to see some of you at the Fontan Education Day to be held on Sunday, 18 October 2015 in Sydney at The Children's Hospital at Westmead. This forum will provide a unique opportunity to hear from specialists in paediatric cardiology and congenital heart disease. Full details are on the Coming Events section of our magazine on page 3. Our team really enjoyed the 25th Anniversary Gala - it was a great excuse to dress up and enjoy a night out and celebrate 25 years of HeartKids. 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. You can also write “HeartKids visit requested” on the whiteboard in your child’s room. Have a safe and healthy winter! Tracy, Sherrie and Rebecca
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!
Thank you to Woolworths Eastland for their regular contributions to our RCH morning teas.
Support at MonashHeart
A special hello and our very best wishes to all the heart children who hav e been in hospital in the last three months. 14
Our Family Support Coordinator ic on Sherrie McDonald visits the clin Wednesdays 1.00pm - 4.00pm Medicine Monash Children’s Clinic, Special ) Centre (next to McCulloch House 246 Clayton Road, Clayton
Hospital Happenings Easter at RCH
We held a special morning tea for our mothers at The Royal Children's Hospital on the Thursda y before Mother’s Day.
HeartKids decorated the Koala ward for Easter and on Easter Sunday we distributed Easter gift bags to the patients and families on the cardiac ward at The Royal Children’s Hospital.
Special thanks to The Cake Angels for the beautiful baked goodies. Our mothers enjoyed seat ed massages by Edwina from Evolve College and hand/n ail treatments by Laura from The Body Shop.
On Mother’s Day our Support Team distributed gift bags to mothers in Koala and Rosella wards.
Thank you Cloud 9 Thoroughbreds, Goody Gumdrops, Made with Love and all donors for your generous donations for our Easter gift bags.
International Nurses Day 12 May 2015 International Nurses Day is an opportunity to celebrate nurses and their contribution to the health of society. Each year, the International Council of Nurses chooses a theme for International Nurses Day discussions. The theme for 2015 was: ”Nurses: A Force for Change – Care Effective, Cost Effective”
NURSES: A force for chan
International Nurses Day is celebrated around the world every May 12, the anniversary of Florence Nightingale’s birth. HeartKids is constantly impressed with our wonderful nurses’ skills and commitment as they work with our children and families. THANK YOU to each and every one of you for making a difference in the lives of our heart children. HeartKids provided afternoon tea and seated massages for the Koala and Rosella ward nurses on 12 May.
Improving Health and
12 May 2015
International Nurses Da
Transition and Adolescent News Congenital Heart Disease Transition Project An exciting new project for young adults transitioning into adult cardiac care has been funded through the Department of Health and Human Services and is currently underway at The Royal Children’s Hospital, Melbourne. The project will assist in identifying any transfer issues and improving the transition process of young adults with Congenital Heart Defects when transferring to an adult health care facility. Who’s involved? * The Cardiac Transition Project Coordinators are, Amy Baylis who has worked in the Emergency Department at RCH and currently in research at MCRI, and Kate Moloney an Associate Unit Manager on the Koala ward.
* The Victorian Clinical Cardiac Network and the Victorian Paediatric Clinical Network * RCH, RMH, MMC * Patients and their families * Cardiologists * Private Specialists and GPs How you can be involved Surveys have been developed to assist in identifying young adults' knowledge of their cardiac conditions, surgeries and medications and their understanding of the transition process. Research has also commenced to gain feedback from cardiac patients that have recently transferred to adult care. The links to the surveys are: *Patients from ages 15-19* https://secure.rch.org.au/survey/index.php/survey/index/ sid/281272/newtest/Y/lang/en *Transitioned Patients* https://secure.rch.org.au/survey/index.php/survey/index/ sid/553818/newtest/Y/lang/en If you have any questions about the project, please email firstname.lastname@example.org
Would you like to meet young people who get what living with chronic illness is like? The Chronic Illness Peer Support Program (ChIPS) might be the place for you! ChIPS is a vibrant adolescent peer support program for young people who are: • 12-25 years of age with a primary diagnosis of significant chronic illness • Ready and able to attend an initial peer support group; either an Eight Week Group (1.5hrs per week) or a two day Intensive Group ChIPS is based at The Royal Children's Hospital (Centre for Adolescent Health), Melbourne and is for young people from metropolitan and rural Victoria. The ChIPS experience begins with the Eight Week Group or Intensive Group. These groups are facilitated by ChIPS staff and a trained ChIPS peer leader. They are informal and supportive and explore the challenges of living with chronic illness. Once an initial group is completed participants can attend camps, socials and leadership training to form further friendships with people their own age who understand the limitations of living with a chronic illness. A large number of events are delivered by ChIPS participants with support from ChIPS staff and mentors. To discuss the program further or to make a referral please contact Meagan Hunt or Jarnia Cameron in the ChIPS office on 9345 6616 or email email@example.com or firstname.lastname@example.org
www.rch.org.au/chips https:// www.facebook.com/chipsrch
Society of Adolescent Health and Medicine Conference - Los Angeles, USA Earlier this year in March, I attended the International Society of Adolescent Health and Medicine (SAHM) conference in Los Angeles, where I had the incredible opportunity to present a workshop as a part of a team from the RCH – The Transition Support Service, the Youth Advisory Council and ChIPS. Our workshop was entitled ‘Patient to Professional- Implementing Peer Mentorship to Improve the Health Outcomes of Adolescents and Young Adults with Chronic Health Conditions and/or Disabilities’.
initiatives to address this important period of change, including great programs to connect young people with each other. We were so pleased to be representing the RCH and Australia as the work that we are doing here to engage young people in their health care and creating a “whole hospital” approach to this increasing area of need, is something that I am very proud to be involved in. Here are 3 things I learnt: 1. It seems like so many people in the U.S.A. miss out on healthcare if the high cost of medical insurance fees isn’t covered. This often means no access to much-needed healthcare for so many people. I also noticed that homelessness was a big issue in downtown L.A. 2. T he world of adolescent health and wellbeing is in safe hands, with the most passionate and hardworking people I've ever met driving research and important new initiatives. It was inspiring to meet these people at the conference and I was excited to know that Australia is at the forefront of addressing these important issues. 3. C hicken and Waffles is the best thing I've ever eaten… ever!
Evelyn Culnane, Jordan Hammond, Rebecca Peters and Susan Sawyer from the centre for Adolescent Health and Transition Support Service
This trip was only made possible through the generous support of HeartKids Victoria/Tasmania and through the Edie Moore travel scholarship which I was awarded to help with some of my travel costs.
I can't thank HeartKids Victoria/Tasmania enough for enabling me to present at the SAHM conference in Los Angeles, as without HeartKids Victoria/Tasmania’s kind generosity, this amazing learning opportunity would not have been possible. I will endeavour to embed what I have learned through this oncein-a-lifetime experience, into my new and exciting role with HeartKids. Rebecca Peters Youth Support Coordinator HeartKids Victoria/Tasmania
This experience was so very rewarding and presenting at the SAHM conference was definitely the highlight of my trip. I shared my journey and learnings of my own ‘transition’ from being a patient to the role of a youth mentor with the Transition Support Service at RCH and Youth Support Coordinator with HeartKids Victoria/Tasmania. It was also fantastic to hear from such diverse presenters from all parts of the U.S.A., Canada and other countries. The SAHM conference opened my eyes to how fortunate we are to have the healthcare system that we do in Australia. A number of different aspects relating to transition were presented and a variety of innovative programs were highlighted. Some of these sessions examined interesting topics such as moving out of home, transitioning into adulthood, transitioning genders (gender dysphoria), transition from primary school to high school, transitioning from paediatrics to adult health care and many other areas that are important to adolescent health and wellbeing internationally. It was fascinating to learn how others around the world are implementing different transition processes and models of care for adolescents and young adults moving from paediatric to adult health care services. There seemed to be a range of
Reflections In Loving Memory of
In Loving Memory of
26 November 2013 25 April 2015
11 December 2010 4 May 2015 "Benjamin and His Heart"
Something was wrong, so early on News no new parents should need to hear. Their Godcentered eyes stayed fixed on the prize, "nothing will interfere with The Maker's intention."
The world may never notice If a Snowdrop doesn't bloom, Or even pause to wonder If the petals fall too soon.
The miracle arrived, and the miracle survived. What a great name, he was called to be Benjamin. We all gathered round to see faith fill his heart, and it beat out the sound of attention. And when you'd see Benny smile, he appeared older than child, He had something inside that belied the naive. Did he know beyond age that this life is a stage, For the glory of his awesome Creator? Benjamin gave as good as he got, he reached so far and wide, until homeward high this braveheart flew. 100,000 prayers beat the wings to heaven, what's left behind is the great love he imbued.
But every life that ever forms, Or ever comes to be, Touches the world in some small way For all eternity. The little one we longed for Was swiftly here and gone. But the love that was then planted Is a light that still shines on. And though our arms are empty, Our hearts know what to do. For every beating of our hearts Says that we love you.
~ Dean Meek ~
~ Author Unknown ~
In Loving Memory of Isabella Care 15 May 2015 – 24 May 2015
"Isabella" The most gentle, kind voice said to me, “Isabella, come this way”.
I went up an escalator made of soft white feathers. They were angel wings. I floated to the top and there were the greenest pastures you’ve ever seen. The rainbow was brightly coloured and it filled the bluest sky. The sun was
warm on my skin. There was the most amazing playground with a bright pink slide, yellow swings, red monkey bars and even a flying fox. I can’t wait to try them. There’s an ice cream stall to my left with fairy floss. To my right a white Ferris Wheel with intricate carriages. All around there are children of different ages playing and laughing. I see three people walking towards me with the most loving smiles. I don’t recognise them, yet there is something very familiar about them. They say “Hello Bella, we have been waiting for you”. One scoops me up in his arms and kisses and cuddles me. “I am your Grandfather,” he says, “and these are your Great Grandparents. Let’s go find your cousin Nicholas and I will show you off to the rest of the family”. “Welcome home, this is Heaven”. ~ Rosina Licina ~
In Loving Memory of Samuel Martin 3 December 1995 1 June 2015
"Stop all the Clocks" ~ W H Auden Stop all the clocks, cut off the telephone, Prevent the dog from barking with a juicy bone, Silence the pianos and with muffled drum Bring out the coffin, let the mourners come. Let aeroplanes circle moaning overhead Scribbling on the sky the message He Is Dead, Put crepe bows round the white necks of the public doves, Let the traffic policemen wear black cotton gloves. He was my North, my South, my East and West, My working week and my Sunday rest, My noon, my midnight, my talk, my song; I thought that love would last for ever: I was wrong. The stars are not wanted now: put out every one; Pack up the moon and dismantle the sun; Pour away the ocean and sweep up the wood. For nothing now can ever come to any good. Deb and Greg would like to express their eternal gratitude to HeartKids for their endless support, care, love and compassion that has been shown to our family over the past 19 years. In particular, we would like to thank Tracy and Sherrie for the love that they gave to our precious son ....... Sam loved them both so dearly. We would also like a special mention to Amy and Bec for their kindness and support to us all.
Reflections Heart Angel Remembrance In Loving Memory of Mayah Gambin 18 September 2013 16 June 2015
“If there is ever a tomorrow that we are not together, there is one thing you should always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is: even if we’re apart, I will always be with you in the heart.” ~ Winnie the Pooh ~
Goodbye Butterfly In my dreams you laugh and play, In dreams I never have to question why I had to let you fly away, Goodbye butterfly, Your memory is as clear today, Your beauty none can deny, Yet we had to let you fly away, Goodbye butterfly, Here for just the briefest time, We’re left with tears in our eyes, Because we had to let you fly away, Goodbye butterfly, Our love just couldn’t hold you, Believe me we did try, We had to let you fly away, Goodbye butterfly, Fly high my darling Angel child, Among the clouds, up in the sky, You had to go, to fly away, Goodbye butterfly. ~ Christine Bevington ~
Thinking of You
the families Our thoughts and prayers are with and friends of all Heart Angels.
We remember these Heart Angels whose birth date or anniversary is in the Winter months.
Birth Dates Breanna Fry 2 June 2010 Zach Beadel 5 June 2010 Jessica El Hassan 9 June 1993 Coco Du Chateau 11 June 2011 Thomas Jones 13 June 2008 Dylan Grilli 15 June 1993 Makayla Cook 18 June 2012 William Fisher 19 June 1999 Emily Cole 30 June 1987 Oscar Batrouney 1 July 2009 Alisha Woolley 1 July 2013 Cohen Lewis 7 July 2007 Stephanie Williams 16 July 2013 Summer Senior 18 July 2013 Charli Hartley 20 July 2009 Margy Kyberd 22 July 1967 Jamie Starkey 25 July 1993 Matilda Annie Farley 27 July 2011 Jack Farley 5 August 2013 Corey Lake 7 August 2000 Paige Berry 9 August 1995 Arlo Donnelly 9 August 2012 Kristen Potts 10 August 1997 Erinn O'Brien 14 August 2005 Jackson Walsh 17 August 2009 Benjamin La Motta 31 August 2009
Anniversary Dates Michael Meares 13 June 2014 Sarah Inkster 19 June 2007 Owen Crew 26 June 2007 Xavier Samu 27 June 2012 Cohen Lewis 10 July 2007 Raphaela Perrin 10 July 2010 Summer Senior 18 July 2013 Paul Livingstone 19 July 1992 Avelynn Wood 20 July 2012 Makayla Cook 21 July 2012 Kristen Potts 23 July 2007 Rowan Seward 25 July 2013 Matilda Annie Farley 27 July 2011 Charli Hartley 28 July 2009 Breanna Fry 2 August 2014 Jacob Holden 11 August 2013 Erinn O'Brien 14 August 2005 Margy Kyberd 15 August 2009 Thomas Jones 19 August 2011 William Fisher 23 August 2003 Emily Cole 26 August 2006 Eashana Sanmogam 27 August 2014 Benjamin La Motta 31 August 2009
National Volunteer Week: 11-17 May 2015 National Volunteer Week (NVW) is the largest celebration of volunteers and volunteerism in Australia, and provides an opportunity to highlight the role of volunteers in our communities and to say thank you to the more than 6 million Australians who volunteer. HeartKids Victoria/Tasmania would like to take this opportunity to thank the many volunteers who give so much of their time to make a significant difference to our community. Our volunteers do such a wonderful job in supporting the HeartKids team and, more importantly, our families. We are only able to provide the activities and services we do with the help of our dedicated team of volunteers. We acknowledge the work of some of our volunteers below. Our birthday card co-ordinator, Julie and her heart child Sarah have been writing birthday cards and sending them to our heart children aged 1 to 21 for over ten years. They write around 100 cards a month now!
We would like to thank our numerous volunteers who help us with our working bees, packing gift bags to give out on the ward on special days such as Easter, Motherâ€™s Day, Fatherâ€™s Day and Christmas. These gift bags show our love and support for families who have children on the cardiac ward or in Intensive Care on these special days. Volunteers also assist with putting together Information Packs, helping with mail outs, packing camp goodie bags etc.
HeartKids Victoria Tasmania is fortunate to have the support of well-known personalities who act as ambassadors for our organisation. Our ambassadors are passionate advocates of the work we do supporting children and families affected by CHD. We acknowledge their incredible support for which we are most grateful. HeartKids is extremely grateful to our past and present branch coordinators. We have branches throughout Victoria and Tasmania which allows local support and many branches are running regular catch ups. We would like to acknowledge their special contribution to our support work. Our Fundraising volunteers are so important to us. Many volunteers have dedicated their time to hold their own fundraiser or assist at fundraising events. Their efforts provide funds to continue our support work and also provide much needed awareness in the community. We thank those volunteers who have coordinated individual fundraising events as well as those who volunteered at our fundraisers, for example, shopping centre stalls, shaking tins at train stations, etc.
We sincerely thank everyone who assists with organising and helping at our member activities. We would like to acknowledge Kiwanis, the FunFlight team, Christmas Party for Special Children, Marco the Magnificent and all our volunteers. With the help of many volunteers we are able to offer member activities such as Box Hill Train Day, Myuna Farm Day, Candlebark Farm Family camp, Shepparton picnic, FunFlight and Christmas parties, etc. We acknowledge our camp volunteers at Tween, Teen and Family camps. Numerous camp attendees have benefited from meeting other children and families as well as enjoying a fun time away. We thank all our volunteers for their time and commitment to these support activities. Our Board consists of nine members. All Board members are volunteers and dedicate their time and experience to ensuring the smooth running of the organisation. More than half of the Board members are either family members of heart children or adults with Congenital Heart Disease. Thank you to our Board members.
Have you considered volunteering to contribute to the HeartKids community?
We are building a great team of volunteers so we can fill a wide variety of roles throughout the year. To discuss volunteering, contact Lynette: email@example.com or 0418 548 879. You will find more information and the Volunteer Registration Form on our website. Please check our website regularly for volunteering opportunities: http://heartkidsvictas.org.au/how-you-can-help/volunteering/
Enjoying Member Activities Kiwanis Sponsored... Razzamatazz
Catch Up Celebrating 25 Years of HeartKids
L to R: group of young adults; some of the young adults from the 1998 poster; cutting the cake; families catching up.
Courtesy of the Rotary Club of Preston, we were given free tickets to this event which was held on Saturday 9th May 2015 at the Melbourne Convention Centre. This annual show always excites our young heart children and their families.
Myuna Farm Outing
There was fun and excitement on the farm during our annual get together at Myuna Farm, Doveton on Sunday 12th April. This year was the tenth occasion we have been offered this event by the Kiwanis club of Sunbury. Thank you to the Kiwanis team and Myuna Farm staff! The day included free train and pony rides, a visit to see the animals on the farm including the baby nursery animals plus a free sausage sizzle lunch. Face painting and balloonology provided by the Pass the Parcel team also added to the excitement and Marco the Magnificent was popular with his magic tricks.
Thank you for your recent gifts... Alexandra Foodworks Ample Café and Bar Art Cabriolet Austin, Monica Balfours Bus Bennett, Peter Biggin & Scott Boumadi, Shauna Bull, Loretta Caruso, Louise Cloud 9 Thoroughbreds Cook, Leon & Jackie Cust, Dion D, Steve Drew, Tammy Duffy, Frances Ebbage, Matthew Featherston, Kevin & Beryl Felici, David Flavour Café Foster, Arthur Gee, Andrew Gia, Nikki Giblin, Lisa
Gibson, Libby Glenvale School Cardinia Campus Greater Shepparton City Council Grimbos, Anita Gruber, Maria Halstead-Ferguson, Dianne Harcourt Foundation Hassan, Zerin IKEA James, Tony Jet Couriers Karatjas, Melissa Kelgrove holdings KIKGROUP Kretschmer, David Kurt, Ebru LeasePlan Larsen, Warren Magistrates' Court of Victoria Malone, Jane and Rod Munro, Graham North Melbourne Football Club NPMT
Parkville Store People's Choice Credit Union Price, Matthew Ray, Paul Richmond, Bill Riggio, Phillip Ritchies Stores Shamrock Hotel Specsavers Pty Ltd Stanley, Kiana Sturgess , MD and RC Swierc, Dianna Tang, Peter & Joyce The Andrews Foundation The Australian Cake Angels Network Timber Merchants Association Woolworths Eastland Z Transport Group Memorial Donations in memory of: • Benjamin Jones • Emily Cook • Audrey Ebbage • Kiara Shaye Ward
Financial contributions over $500 are acknowledged in this column.
HeartKids was invited to run a stall at IKEA Springvale over the Easter weekend and we were thrilled to be part of the 40 years IKEA Australia celebrations during the first week of the June/July school holidays. With a team of volunteers on both occasions, we had face painting, nail painting activities and balloon sculptures by Marco the Magnificent to create awareness and raise funds for HeartKids. Thanks to IKEA and our wonderful volunteers we raised $700 and $1267.40 respectively!
Simple Pleasures Brunch The Simple Pleasures committee hosted the second “Simple Pleasures Ladies Brunch“ on Friday 12 June. A total of 83 guests attended the brunch which was held at Pier 35 Bar and Grill, Lorimer Street, Port Melbourne. Gary Karatjas, former President of HeartKids Victoria/Tasmania, cardiac patient and father of a heart child, was a guest speaker. The brunch was hosted in conjunction with Mrs Australia Globe, who have recently chosen HeartKids as their official charity. The event was thoroughly enjoyed by everyone who attended and raised $4000. Proceeds from the Simple Pleasures Brunch will fund HeartKids’ twice weekly morning teas at The Royal Children’s Hospital.
Sponsors and Supporters Victorian Partners:
National Supporters: Founding Sponsor Principal Partner Major Partners Founding Partner - Grants-In-Aid Corporate Supporters
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MELBOURNE METRO BRANCHES Bundoora Jessica Shakespeare 0409 165 004 firstname.lastname@example.org Dandenong Lucy (Fatima) Hussain 0430 738 820 email@example.com East Bentleigh Maggie Stavrou (03) 9563 7133 firstname.lastname@example.org Eastern Suburbs Pavlina McMaster 0438 233 414 email@example.com Janita Felici 0422 976 024 firstname.lastname@example.org Frankston/Peninsula Maxine Selzer 0421 561 958 email@example.com Melton Lauren Tyrrell 0424 594 757 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 Paige Donnelly 0424 239 964 email@example.com REGIONAL BRANCHES VICTORIA Albury/Wodonga Cathie Kelly 0417 049 341 firstname.lastname@example.org Bairnsdale Caroline Foard 0438 928 821 email@example.com
HeartKids Vic Inc CONTACT US PO Box 803 Parkville Victoria 3052 P: (03) 9329 0446 E: firstname.lastname@example.org
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
Contact Details Ballarat Rohini Dobell & Alan Smith 0407 851 648 email@example.com Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 firstname.lastname@example.org Clare Fountain 0418 140 347 email@example.com Nadine Daly 0413 710 342 firstname.lastname@example.org Cobram Bianca Quinane 0419 674 408 email@example.com Echuca/Moama Tracey Hard 0438 962 056 firstname.lastname@example.org Geelong Libby Gibson (03) 5250 2439 0411 057 905 email@example.com Horsham Gaynor Baker (03) 5384 2280 firstname.lastname@example.org Kyneton/Woodend Amy Crosbie 0411 552 264 email@example.com Mildura Tara Williams 0416 622 751 firstname.lastname@example.org Portland Kerry Sluggett (03) 5523 2503 0418 312 320 email@example.com Shepparton Cheryl Alexander (03) 5825 4005 firstname.lastname@example.org Stawell Leanne Amarant (03) 5358 2945 or 0419 864 412 email@example.com
Traralgon Chrissy Ades 0400 857 813 firstname.lastname@example.org Wangaratta Lisa Dekeling 0421 655 636 & Shane Hack 0488 221 184 email@example.com Wonthaggi Erin Howell 0431 702 863 firstname.lastname@example.org TASMANIA Burnie/Devonport Claire Gluyas 0408 351 661 email@example.com Hobart Paul Hyland (03) 6247 8435 0418 561 504 firstname.lastname@example.org Launceston Kylie Smith (03) 6393 6240 0448 983 587 email@example.com 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 firstname.lastname@example.org CARDIOMYOPATHY ASSN of AUST. Website: www.cmaa.org.au/ DOWN SYNDROME Sam Jackson 0439 360 035 email@example.com
EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 firstname.lastname@example.org hearts4heart - Support for Adults with Heart Disease Tanya Hall 0426 240 636 email@example.com 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 firstname.lastname@example.org KABUKI SYNDROME Stacey McKiernan (03) 5275 1542 email@example.com Website: www.sakks.org KAWASAKI DISEASE Shirley Mates (03) 9894 1257 firstname.lastname@example.org Website: www.kdfoundation.org.au LONG QT SYNDROME (LQTS) Sherrie McDonald 0431 544 510 email@example.com www.sads.org.au or www.sads.org.uk/ MULTIPLE BIRTHS April Schubert 0407 551 967 (02) 6056 6448 firstname.lastname@example.org MUSLIM FAMILIES Lucy (Fatima) Hussain 0430 738 820 email@example.com OVER 18’s Erin Cervelli (03) 9513 9030 PACEMAKERS Mandy Tichelaar (03) 9728 6984