Autumn 2015
Quarterly Magazine for Victoria and Tasmania
* * *
Volume 25 Issue 1
Super Boss Day Grants-In-Aid Teen Camp
support
•
awareness
•
research
•
advocacy
Matters of the Heart -
Chief Executive Officer As there has been a fair bit happening since the last magazine, I am not sure where to start...so here goes.
February saw three major activities converge; Awareness Month, Sweetheart Day and of course, our inaugural Super Boss Day. Whilst these are mentioned elsewhere in this edition, it is very important to take the opportunity to thank everybody who took part in all of the activities, whether that was volunteering, holding a morning tea, raising funds at your workplace, or dressing up as your favourite Super Hero...all in all it was a great time to celebrate HeartKids and wave the flag. Regarding the success of Super Boss Day, I would like to mention the work of Luisa Kenos, who came onto our team in November to drive the registrations and fundraising. Luisa did a fantastic job, and along with Sandra Zlatanovski, were both major reasons for how well it went.......job well done. Since our last edition, Board member Claire Gluyas, based in Tasmania, has stepped down. On behalf of our team, we would like to thank Claire for her support and wish her and her family all the very best. Besides the feverish activities taking place during the first couple of months of the year, our staff started our move from 55 Flemington Road to 33/204 -218 Dryburgh Street, North Melbourne. Whilst still close to The Royal Children’s Hospital, the new office provides a far more appropriate working environment so please drop in if you are in the area. 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
HeartKids Vic Inc Employees * Chief Executive Officer Norm Hutton 0409 874 452 norm.hutton@heartkids.org.au * Support Manager Tracy Stanley 0478 091 773 tracy.stanley@heartkids.org.au * Family Support Coordinator Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids.org.au * Youth Support Coordinator Rebecca Peters rebecca.peters@heartkids.org.au * Member Activities Coordinator Lynette McCoullough lynette.mccoullough@heartkids.org.au * Membership/Magazine Coordinator Margaret Patullo margaret.patullo@heartkids.org.au * Development Manager Sandra Zlatanovski sandra.zlatanovski@heartkids.org.au * Operations and Administration Coordinator Paola Rossi paola.rossi@heartkids.org.au * Corporate Relationship Coordinator Luisa Kenos luisa.kenos@heartkids.org.au * Fundraiser & Events Coordinator Pruedonce Bainbridge fundraising.victas@heartkids.org.au * Magazine heartkids@heartkids.org.au
No change to phone number or postal address: (03) 9329 0446 PO Box 803, PARKVILLE VIC 3052
ll Front cover: Adam & Charlotte Sorre ll. Sorre Adam of Photo courtesy information for this edition. Thanks to all who sent photos and - send to: heartkids@heartkids.org.au 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
2
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 Razzamatazz - Melbourne Date/Times: Saturday 9 May 2015; Show times 1pm or 4pm Venue: M elbourne Convention and Entertainment Centre Courtesy of the Rotary Club of Preston, we have free tickets to this event. If you are interested in attending, please express your interest by booking on www.trybooking.com/GRLX Email Lynette on lynette.mccoullough@heartkids.org.au or ring her on 0418 548 879 if you have any problems booking. Tickets are subject to availability at the time you book, so RSVP as soon as possible to improve your chances of securing tickets.
Informal Lunch for Parents & Over 17's Date/Time: Saturday 23 May, 11am-2pm. Venue: Doncaster Pancake Parlour, 550 Doncaster Road. Get-Together for Parents/Siblings & Heart Adults aged over 17. Join us to celebrate 25 years since HeartKids began on 23 May 1990; meet some of the original Committee members and their adult heart kids. All welcome but numbers are limited. Meals at your own cost. RSVP by 16 May. Contact: margaret.patullo@heartkids.org.au
HeartKids Cup: North Melbourne v Sydney Swans Date/Time: Saturday 13 June, 7.00pm Venue: Etihad Stadium This year the HeartKids Cup will be held in the AFL Round 11.
'Stars of the Silver Screen' HeartKids Gala Date: Saturday 27 June Venue: RACV Club, 501 Bourke Street, Melbourne Celebrating HeartKids 25th Anniversary
People's Choice PJs Run Date/Time: Saturday 26 July; the PJs Run starts at 11am Please join our HeartKids team in the People's Choice PJs Run. The People’s Choice PJs Run will commence at the start line for the 5km stage of Run Melbourne at 11am on Sunday 26 July 2015, with a relaxed 3.5km route along the Yarra. Run Melbourne’s presenting partner People’s Choice Credit Union is bringing back this fantastic spectacle for it’s second year to raise funds for HeartKids to support families of children with heart disease.
SAVE THE DATE: NE SATURDAY 27 JU
In This Issue
3 Coming Events 4 Awareness Month and Sweetheart Day 5 Super Boss Day 6 Grants-In-Aid 7 Teen Camp 2015 8-9 Leah Askey-Doran - Heart Kid to Adult 10 Adults and Young People with CHD 11 HeartKids Youth 12 Branch News 13 Heart Children Reaching Milestones 14 Congratulations 15 Support Matters; Hospital Happenings 16 New Private Cardiology Clinic at RCH 17 Okee App for Medical Imaging 18-19 Reflections 20-21 HeartKids Families Enjoying Activities 22 Donation Acknowledgements 23 Sponsors and Supporters 24 Contact Details and Diary Dates You can run, jog or walk the track in PJs, which will be supplied as part of your registration fee. Picture hundreds of people running in PJs, all for HeartKids! Please go to http://www.runmelbourne.com.au/pjs-run/ to register. Our team name is HeartKids Victoria Tasmania.
Run Melbourne Date: Saturday 26 July Run Melbourne provides you with the choice of 3km Kids event, 5km run/walk, 10km run or Brooks Half-Marathon. Please go to http://www.runmelbourne.com.au/ to register. You can fundraise for HeartKids by setting up an Everyday Hero page. The Age Run Melbourne, presented by People`s Choice
Awareness Month and Sweetheart Day The month of February is HeartKids Awareness Month and Sweetheart Day is held on 14 February. We would like to thank everyone for their hard work and support, which helped raise awareness and much needed funds to enable us to continue our work supporting children and families affected by Childhood Heart Disease (CHD). We couldn’t have done it without our wonderful volunteers and community minded organisations. We particularly thank Chantel from Commonwealth Bank, Docklands and Clare from RMIT for their fundraising within their workplace and appreciate ANZ staff volunteering at the train stations. We appreciate the time you have taken to assist us in our fundraising and in further educating the community about the importance of our charity and the positive impact it has on many people’s lives. The total amount raised was over $17,600. Again a huge thank you to everyone for their fantastic efforts as this fundraiser would not have been possible without the generosity and time donated by our volunteers.
Broadmeadows Shopping Centre From 9 to 19 February, Broadmeadows Shopping Centre transformed into a Superhero theme with a little sprinkle of love and hearts. A calligraphy stand manned by amazing artists created customised Valentine's cards and shoppers could purchase a ‘love’ padlock and lock it on the ‘fence of strength’ to support HeartKids. Centre Management staff and retailers embraced the superhero theme on Super Boss Day. We appreciate the ongoing support of Broadmeadows Shopping Centre.
Karingal Shopping Centre A few days leading up to Sweetheart day and on Sweetheart day itself, volunteers manned a stall selling merchandise, wrapping Valentine’s Day presents and collecting donations. On the Saturday some heart children attended and attracted generous shoppers to our table who willingly gave us donations. Many of the Karingal shop owners placed donation tins in their business. We thank Karingal Shopping Centre for their support. Train Station Collection Fundraiser On 14 February, dedicated volunteers, dressed in HeartKids t-shirts, represented HeartKids proudly – showing their commitment to HeartKids and getting the word out to the general public about children with heart disease. Their tin shaking paid off and a good amount of money was raised for our cause.
4
Media Coverage Many of our children and families featured in articles in local newspapers. We thank them for sharing their stories to raise awareness about CHD and HeartKids. HeartKids Victoria/Tasmania Facebook Campaign During February we posted statistics, facts and featured the Faces of CHD. In order to view the album, please visit our Facebook page, click on photos and select the album “Faces of CHD”. The Awareness month campaign significantly increased activity on our page, with our reach peaking at 93,575, which is amazing. We would like to thank all the families who shared their stories during HeartKids Awareness Month, as this really assisted us in informing more people about CHD. We also remembered our angels and celebrated our survivors during February. Please keep raising awareness any way that you possibly can, as CHD doesn’t just affect our children and their families for one month of the year - it is an ongoing struggle.
Super Boss Day Well, after almost twelve months of throwing around this idea - the development, launch and delivery - on 19th February, HeartKids Victoria/Tasmania celebrated our inaugural Super Boss Day....and what an experience it turned out to be. The 115 Super Bosses who registered have raised a fantastic $93,000.....so far. We still have a couple of Super Bosses holding their days later in March and early April. When we start to list the highlights it is almost impossible to know where to begin, however, here we go: Our highest fundraisers were nothing short of amazing with Adam Sorrell and his team raising almost $14,000, followed by John and Anita Grimbos at just under $9,000, The Royal Children’s Hospital's Cardiac Surgeon and Assoc Prof Yves d’Udekem $6,500, Chris Anstee $5,000 and the HeartKids Board's very own Anthony Flapper who raised over $4,000. We cannot begin to express our appreciation to not only them, but all who made it such a success. Please make sure you look at our photo gallery: http:/heartkidsvictas.org.au/galleries/super-boss-day/ The amount of publicity the campaign received, from the launch back in October right through to the number of Super Bosses who appeared in their local papers, was fantastic and our thanks goes out to Progressive PR who was behind most of that. Social media was used extensively and for that we should acknowledge Sentius Digital and Sage Strategy, who also created our fantastic Super Boss website, not to mention Cyclone whose creative input brought Super Boss to life. At present we are reflecting on this year’s campaign with a view of making 2016 even bigger for HeartKids...so please look out for more information...or should we say, stay tuned to the same Bat Channel and the same Bat Time for more information.
5
Research Grants-In-Aid 2015 HeartKids Australia is delighted to announce the research projects to be funded under their Grants-in-Aid program in 2015. The Grants-in-Aid program supports research and research capacity building in congenital and acquired childhood heart disease. HeartKids Australia would like to thank Wilson HTM Foundation, Founding Partner of the Grants-in-Aid program, the HCF Research Foundation, Kiwanis Australia, HeartKids New South Wales, HeartKids Victoria, HeartKids South Australia and HeartKids Western Australia for their generous support of these grants. The five research projects to be funded in 2015 are as follows: Outcomes following a cardiac procedure in the first six years of life Principle Investigator: Dr Samantha Lain Institution: Kolling Institute, University of Sydney Project Description: Up to 50% of children with congenital heart disease (CHD) will require operative management. This has a significant impact on these children, their families and those involved in providing care. In Australia, there is very little research about the health, educational and developmental outcomes of these children. Linked population health data provides a unique opportunity to evaluate the CHD population. This project aims to examine the frequency and annual trends of cardiac procedures in children in New South Wales, their subsequent health service utilization and health outcomes, and educational and developmental outcomes. ________________________________________ Exercise-induced hypertension in childhood following neonatal aortic coarctation repair Principle Investigator: Associate Professor Yves d’Udekem Institution: Murdoch Children’s Research Institute, Melbourne Project Description: Aortic coarctation (narrowing of the aorta) occurs in 5-10% of all children with congenital heart disease. Surgery improves patient outcomes, but results in high blood pressure in 75% of adults, which is associated to a 20% risk of death by cardiovascular disease within 30 years. Early detection of hypertension in children may enable us to initiate therapy aiming at preventing the development of hypertension. We want to investigate the capacity of exercise testing and of a recently developed ultrasound analysis of the blood flow of the carotid artery as a way to detect early signs of hypertension. ________________________________________ Functional Health in adolescents who have undergone open heart surgery in infancy Principle Investigator: Dr Christian Stocker Institution: Lady Cilento Children’s Hospital, Brisbane Project Description: Based on research overseas, brain abnormalities and delayed neurologic development due to congenital heart disease and its treatment occur in up to 30% of patients. Neurologic development of 43 infants who underwent open heart surgery in Queensland between 1999 and 2001 were assessed at 1 and 5 years of age. Functional health (physical health, mental
6
Grant recipients with Mary Jung and Russell McCrory from Founding Partner, Wilson HTM Foundation.
From left: Mary Jung, Professor Chris Semsarian, Prof Stuart Grieve, Associate Professor Yves d’Udekem, Dr Samantha Lain, Russell McCrory
well-being, academic performance, social integration, and quality of life) of these children should now be assessed before finishing high school. This third assessment study will benefit the patients, and provide important new data on the burden of congenital heart disease on society in Australia. ________________________________________ Clinical and Genetic Studies in Children and Families with Cardiomyopathy Principle Investigator: Professor Chris Semsarian Institution: Centenary Institute, Sydney & Royal Children’s Hospital, Melbourne Project Description: Heart disease in children results in significant symptoms and can ultimately lead to heart failure and premature death. One form of heart disease in children relates to abnormalities in the structure and function of the heart muscle, so called “cardiomyopathies”. Understanding the causes of cardiomyopathies is important to facilitate more accurate and earlier diagnosis, and in helping to predict clinical outcomes in children with cardiomyopathies. The proposed study will use the latest genetic technologies to identify the causes of cardiomyopathies in children. The study will improve our knowledge of these conditions in children, and directly impact on how we diagnose and care for children and their families with inherited cardiomyopathies. ________________________________________ Measuring energetic efficiency in adult congenital heart disease using 4D flow MRI Principle Investigator: Prof Stuart Grieve Institution: Heart Research Institute, University of Sydney Project Description: Adults with repaired congenital heart disease (CHD) require optimal medical and surgical care to avoid progressive dysfunction, ultimately leading to heart failure and possibly early death. In this study we will apply a revolutionary new technique, 4-dimensional flow MRI (4D-Flow) in order to better characterize the abnormalities of flow that likely contribute to long-term outcomes in adult CHD patients. We will focus on two well characterized groups– survivors with a Fontan type repair and those with repaired tetralogy of Fallot (TOF), aiming to collect data that improves our understanding of the physiology of and limitations associated with these conditions.
Teen Camp 2015 The Heartkids Australia National Teen Camp 2015 was held in January at Camp Lutanda in Mt Victoria, NSW. For those who attended camp the previous year, it was familiar territory, and for the rest, a new adventure. There were approximately 70 campers in attendance this year (including a large contingency from Victoria and a few from Tasmania), with over half in attendance experiencing camp for the first time - and what an experience! The weather thankfully was perfect and the location was fabulous. Friday afternoon was a flurry of everyone arriving, setting themselves up, relaxing and getting to know one another (heart conditions and all!). Saturday morning was the start of our action-packed weekend with activities ranging from BMX riding, crate climbing, flying fox, ropes course, swimming and archery. Saturday night was superhero night. Everyone made a huge effort on the night, supervisors included. There were a number of show stoppers on the night and one beautiful dedication to Shaun Wilson-Miller, who was chosen by Camp Champion Josh Harper as his superhero. Understandably, there were lots of cheers and a few tears… The night ended with another Camp Champion, Daniel Sibberas, playing DJ and pumping out some fabulous tunes to get our dance on! Sunday saw another full day of activities for campers, ending with a highly anticipated Karaoke night. When Nurse, Ben Wood, was willing to give up the stage and microphone, we had some surprising renditions belted out including Daniel Trew’s version of ‘Sway’ by Michael Buble. Monday morning saw the end of our time at Camp Lutanda, so with a quick and early exit we were off into Sydney CBD for our last adventure for the weekend. After a quick lunch on the pier at Darling Harbour, we made our way through Madame Tussauds and the SEA LIFE Sydney aquarium. And then before we all knew it, it was time to start heading to the airport. Dominating the Sydney domestic terminal food court, everyone started saying goodbye to old friends and new ones with promises of seeing each other at next year’s camp.
The Tasmanian group
When the Victorian group landed in Melbourne on Monday night, we saw lots of happy (and relieved!) parents who had come to collect their campers. And then camp was done for another year. A massive thank you to HeartKids Australia who again organised a fabulous camp. It was especially great that Jann Kingston, HeartKids Australia CEO, attended the camp this year. Teen Camp 2015 was the best camp to date that I have attended - and I have been to a number of teen camps in my time! The campers were fun, relaxed and wanted to be there – in some instances, some were willing to stay! The Camp Champions were exceptional and very helpful to the supervisors under the guidance of David Cervelli. Finally, the team of supervisors and nurses, who are mostly now regular attendees, were fantastic and I believe had as much fun as the campers. Without this team of volunteers, camp could not happen. A big thank you to all. Bring on Teen Camp 2016! Written by Erin Cervelli
Camp Champions are young people with CHD who have attended at least one Teen Camp and act as role models for campers, providing peer support and guidance.
Happy campers from Victoria
7
Leah Askey-Doran....
Leah after her first surgery – one
week old
There has never been a dull moment with our now 19 year old daughter, Leah. She has always been full of surprises. Even before she was born she had the doctors scratching their heads over her heart condition. At the 18 week scan, they found that her heart was more on the right side and flipped over - a condition known as Dextrocardia. You know something is wrong when more and more doctors come into the room. Leah’s Dad turned to me and jokingly said, “I bet they are going to tell us her heart is on the wrong side”, which is what happened! Knowing about her condition before-hand we travelled from Hobart to the Royal Women’s Hospital in Melbourne two weeks before the due date. Leah arrived on the 12th of September 1995 after 22 hours of labour and a caesarean. We were able to hold our beautiful baby girl only briefly before she was whisked away for assessment. Leah stayed in a humidicrib until they transferred her to The Royal Children’s Hospital (RCH) with her Dad, Michael, in tow. Leah was diagnosed with asplenia (no spleen), right isomerism (two right atriums with no wall between), pulmonary stenosis, a hypoplastic right ventricle, a complete AVSD where the valves were leaking and not formed properly and also Transposition of the Great Arteries (TGA). This meant she needed a series of operations leading up to the Fontan. At one week old, tests showed that the pressures in her lungs were very high so they decided to operate and apply a pulmonary band. However, when they operated, the pressures had changed and they closed her up again. Seeing our tiny baby in ICU covered in tubes and wires for the first time was very traumatic, however over the years it has become a little bit easier. The nurses were wonderful during this difficult time especially with the double challenge of being new parents and having a sick child. When we left hospital with our beautiful two week old daughter, we asked our doctor, “What do we do now”? His reply was, “Go home and treat your child as normal as possible and enjoy every moment with her”. Over the years, this is what we’ve done, in between many trips to Melbourne for operations, procedures and checkups. At one year old, she had a Bi-directional Glen Shunt, which is the first stage of the Fontan procedure. In July 1998 when Leah was three, we welcomed the arrival of her little brother Niam. Prior to the Fontan she needed an operation (LADDS procedure) to attach her intestines to the back wall of her abdomen. The bowel surgery was followed by a valve replacement and the insertion of a pacemaker. Leah had now undergone three surgeries in four months - a stressful time for us all. The Fontan was completed in 1999 when she was four.
8
Leah and the clown doctor After the Fontan it was wonderful to see her colour change from purple to a soft pink. No longer would people make comments like “Oh poor thing, she looks so cold” or “She is too young to be wearing makeup”. She had more energy and things were finally looking good. In 2007 at 12 years old, Leah had the relatively simple procedure of having the battery replaced in her pacemaker. However, after the surgery, she began having palpitations and less energy as a consequence of decreased heart function. She was prescribed medications to help maintain her health. By 2010 her artificial valve, which she received at three years of age, needed replacing. Over the last few years, our doctors had mentioned that Leah would need a heart transplant at some stage, however we always hoped it wouldn’t happen. In 2013 her health began to deteriorate - fluid was building up in her abdomen (ascites), her energy levels were very low and she could not walk very far without becoming puffed. Most medications had been exhausted and despite all efforts of the doctors the heart was just growing tired. The only options left were high doses of diuretics and to plan for a transplant. As Leah turned 18 in 2013, there were discussions as to whether the transplant would happen at the RCH or the adult hospital. We were very happy when it was decided that Leah could stay at the RCH as we knew she would be under the best care possible. She was assessed for a transplant in early 2014 and it was discovered that her liver was also in poor condition. The decision was made to go for a heart/liver transplant which, whilst a big shock, we understood would give her the best chance possible. We were positive but naturally apprehensive about the future. We moved over to Melbourne in order for Leah to
Leah swimming with dolphins
....From Heart Kid to Adult
go on the list. It was a difficult time for the family but this was made easier by the generosity of the Ronald McDonald charity which provided us with a flat near the hospital. This was very comfortable accommodation and a home away from home. Leah is a very resilient young woman and copes with most situations. Even while waiting for the transplant she made the most of her time by exploring the antique and second hand shops with her Dad, volunteering at Vinnies and with HeartKids, as well as looking after other heart children at the hospital. Luckily we didn’t have to wait long and in the first half of 2014, Leah received her transplant. Because the heart surgery was very complex and 14 hours long, and the liver function better than originally thought, the liver was not touched. The transplant went very well and she remained in hospital for a month to recover. We remained in Melbourne for another three months for check-ups and fine-tuning the medication. Finally, after seven months we were able to return home. Through all of this Leah has led a remarkably normal life. She has done well at school, commenced acting at eight and hasn’t stopped; has owned and bred a menagerie of birds; been on several camps for heart children and even went to Vanuatu to build a water tank for a local village as part of a school trip. She has developed a strong social conscience and wants to work with disadvantaged children. It seems that children who endure the challenges that come with serious medical issues compensate by working hard at everything they do and don’t give up. We often think that healthy children and adults can take a leaf out of a heart child’s life! We continue to return to the RCH for check-ups (and the chance to catch up with friends) regularly. Since the transplant Leah has started enjoying life to the fullest and doing all the things she never imagined possible. She has started doing gym classes, going on bushwalks and has just commenced an Arts Degree at the University of Tasmania. We are now facing the transition process to The Alfred in June for
Left: Leah at her Year 10 Leavers Dinner Above: in ICU after her heart transplant Below: post-transplant, Leah on a bushwalk adult care. We will be very sad to leave the RCH. After more than 19 years, and despite everything that Leah has gone through, we look back with enormous fondness and gratitude for all the RCH has given us. We could not have reached this point without the wonderful team of cardiologists, surgeons, transplant co-ordinator, nurses, play therapists and HeartKids support group at The Royal Children’s. And of course, we shouldn’t forget all the families we have met along the way and the doctors and nurses in Hobart who have supported us. We are also thankful for having such a supportive family and appreciate everything they have done to help Leah. We would also like to thank our beautiful, amazing daughter for just being her effervescent self. You have taught us to look at the world in a different way and appreciate every precious moment. For those families just commencing their “heart kid journey”, it’s important to be able to look to children, sorry, adults like Leah and understand that there really is a very bright light on the horizon. You are the light of our lives and we love you very much. Love Mum, Dad and Niam
9
Adults and Young People with CHD The Royal Children’s Hospital Graduation Ceremony 2015 The RCH Graduation Ceremony on 5 March 2015 was organised by the Transition Support Service, ChIPS, Livewire and other hospital teams. This special event was for all young people who have attended the RCH and were soon to be transferring to adult health services or who had recently transferred. The night was a celebration of their time at the RCH, an opportunity to meet other ‘graduates’ and their Hi Everyone, My name is Leah and I’m 19. Nearly 20 years ago I was born with childhood heart disease and my parents had to temporarily move to Melbourne from Tasmania to have me looked after here at The Royal Children’s Hospital (RCH). I have had numerous operations and visits here, in fact so many over the years that this place feels like a second home, and the people are like family. I recently had a heart transplant and lived in accommodation down the road for seven months while everyone here helped me to become the healthiest I’ve ever been. The obvious connection we all have with everyone who has been a part of our health team, who have all watched us grow, helped us at our worst and been there for our best, is one of the many reasons why transitioning to adult care is not only daunting but sad. At the same time we all know that this transition is a huge milestone in our lives which only our parents and the people at this hospital have had the privilege of being a part of, and only they have the depth
families, and farewell RCH staff. Graduates were presented with a unique certificate and RCH momento, and also heard from some of their healthcare teams who offered their congratulatory messages. Cardiac patient Leah Askey-Doran was one of the graduates to speak at the event – we share her speech below. of understanding of hospital life which others around us, unaffected by medical conditions, could never comprehend. As patients we are taught to be tolerant, accepting, determined, strong and above all, to never give up. Our experiences make us unique and give us an understanding on life like no other. None of this of course would ever be possible if it wasn’t for the wonderful health care system we have in Australia which has given us this beautiful hospital and the members of it such as the doctors, nurses, surgeons, admin, counsellors, physios, specific health group support teams, the entertainment outlets such as Starlight and Livewire, and the Transition Program that has brought us all here today. Where ever our paths may take us from this point onwards, we will all hold the RCH in a special place in our hearts. We thank everyone for giving us the best chance at life and for giving us the strength and fight to overcome any hurdles in the future. We will miss you.
ACHD Education Day On Saturday 21st February, HeartKids Australia hosted an Education Day in Sydney for Adults with Childhood Heart Disease (ACHD). With about 40 attendees from all over Australia, each with a vested interest (parents, friends, partners & adults with CHD) in the topic of ACHD, the morning kicked off with HKV Board Member David Cervelli as MC. The varied collection of speakers from paediatric cardiologists, geneticist, nutritionist & therapist each gave a fabulous insight to Adult care & considerations. This information was well received by all & many questions were asked to each person in their field. The afternoon session saw all participants break into groups & given the question ‘Where to from here?’
10
Even though time was limited, each group came up with a great and realistic list of ideas for HKA to take into consideration moving forward in regards to supporting ACHD members. Overall this was a fantastic & informative day for all and something we hope will be repeated. For further information on the day go to: http://www.heartkids.org.au/find-support/achd-ed-day/ Special thanks go to the speakers on the day - Professor David Celermajer, Associate Professor Edwin Kirk, Dr David Tanous, Dr Rachel Cordina, Adjunct Associate Professor Amanda Gordon and the MC and Discussion Session Leader, Mr David Cervelli. ACHD Fact: than children living with CHD. adults more There are now
HeartKids Youth Youth Advisory Committee HeartKids Victoria/Tasmania recently introduced a Youth Advisory Committee. The aim of the committee is to give young people a voice within HeartKids. The Youth Advisory Committee will provide an opportunity for young people to connect, inform and express the needs, views of their peers and to shape the direction of HeartKids’ support services. The Youth Advisory Committee will also provide strong advocacy for young people on issues that matter to them and are relevant.
We hope to achieve this by: • strengthening the capabilities of young people by promoting development opportunities • encouraging young people to participate in the organisation and, • establishing support networks for young people across Victoria & Tasmania providing opportunities to learn, share and have fun. If you are aged over 14 and interested in joining the committee please send an expression of interest to heartkids@heartkids.org.au
Teen Profile - George Hi, my name is George and I am from Queenstown, Tasmania. I am 13 years old. I was born with five holes in my heart and Mitral Stenosis. I have had five Cardiac Catheters and six open heart operations. My last open heart surgery was on June 21st 2012. Here is a bit about me! Who is your hero? My dad is my hero because he is always there for me.
What is your favourite hobby? Skating is my main hobby.
Write a review about the last movie you went to see. The last movie I went to see was Big Hero 6. It's about a boy, Hiro, who lost his brother in a fire. His brother had built a robot doctor before he died. Hiro decides to make the robot a superhero to protect the city.
How often do you skate? As often as I can. In the summer about two hours a day!
What is your favourite sport to watch? My favourite sport to watch is basketball. I support the Boston Celtics.
Are you a clean or messy person? I'm a clean person.
If you had to eat one thing for the rest of your life, what would it be? If I could only eat one food I would like it to be Hazelnut Chocolate from Anvers Chocolate Factory.
Who would you want to play you in the movie of your life? If I was in a movie I would want Simon Pegg to play me because he is my favourite actor.
How would your friends describe you? My friends describe me as 'broken' because I am always hurting myself.
What’s your favourite music to dance to? I don't dance.
If you could live anywhere, where would it be and why? I've always wanted to go to New York City. What makes you really happy? Watching movies or going skating make me happy.
What would you do if you won $1,000,000? If I won $1,000,000 I would leave Tassie and live in Melbourne. I would want to move to Melbourne cause I’ve been there heaps and when I go, I feel like I’m home. What is your favourite holiday? My favourite holiday is Christmas because I get to see my family from Hobart.
What three items would you take with you to a deserted island? If I was on a deserted island I would take food, water and a skateboard. What was the last concert you went to? Robbie Williams in Melbourne. What is your favourite music to listen to? Old rock.
11
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 six members who have recently retired from being the Branch Coordinator in their region: Adele Luca Tullamarine, Fiona Dowie - Mildura, Lauren Roberts - Kyneton, Cassie Clark - Bayside, Simone Munro - Mornington and a special thank you to Kerrie Disney from South Gippsland, who has been available to help families in her region for over 17 years. In this edition we are introducing two of our new Coordinators and you will find their contact details on the back page.
Paige Donnelly Tullamarine
Amy Crosbie Kyneton/Woodend
Hi, my name is Paige and I am married to Steven. We are the proud parents of three children. Our family was introduced to HeartKids when we had our second baby, Arlo, in 2012. We were supported by HeartKids during our hospital stay, and since. Sadly, Arlo passed away at five months of age and is now a Heart Angel. He has an older sister, Billie who is three years old and most recently, a younger brother, Remy who is eight months old. I look forward to being able to help support families within the HeartKids community.
I'm Amy Crosbie. My husband and I live in Woodend, around 45 minutes from Melbourne. We have two children, Dier 9, our heart child born with a VSD and Zara 5, born with infantile epilepsy. When he was four, Dier had surgery to repair his VSD and he also needed a RVOT (right ventricular outflow tract) resection. Dier is monitored annually but is a totally normal, healthy, happy, active young man! He is a national taekwondo champion and we are extremely proud of what he has achieved. He is always willing to give any task the best effort he can. Families from the KynetonWoodend area will be having quarterly Catch-up's this year. I hope you can join us.
Branch Catch Up Days Catch Up Days at Wangaratta-Benalla Branch (left), Point Cook (below), and Geelong (right)
12
Heart Children Reaching Milestones Kyle
Elijah
Matthew Elijah on his first day at daycare.
Matthew was born with Tetralogy of Fallot 13 years ago.
He had surgery at 4 1/2 months to remove a coarctation in his aorta and have an arch repair.
He started high school this year. We hope you stay well and have a great year Matthew!
Now ten months old, he is doing really well. Kyle was born with Tetralogy of Fallot. With his twin, Ethan, by his side, he started school this year. On the walk home he said, 'I love school Mum!'
Cohen
Cohen was born in 2009 with Hypoplastic Right Heart Syndrome and has had many hurdles along the way.
Ryder
Lucas Lucas had two VSD's repaired at six months old and has not looked back since. As well as starting school in February, he also became a big brother to Zander in December. He is an awesome big brother and has taken all the big changes in his stride.
He has started Prep this year and is loving it. This is a milestone that at times seemed a long way away for his family.
William William has Holt Oram Syndrome which can affect the heart and upper limbs. He had heart surgery when four days old and has since had further surgeries to create fabulous thumbs. This year he has started school. He is a resilient, happy little man who takes everything in his stride.
Ryder, who was born with a coarctation of the aorta and VSD, had surgery at three days old.
Willow
He has a very bubbly and social personality and loves playing soccer. He started Prep this year where his older brother and sister go to school. Willow is growing up, having started school this year. Here she is, in her uniform, on her first day at school.
Here is a photo of Blake. He is now in Grade 6, which is his last year of primary school.
Blake
Congratulations! 'BraveHeart Bear' Colouring Competition We had a great response to our BraveHeart Bear colouring competition, receiving lots of colourful, creative entries. Thank you to everyone who participated - you all did a wonderful job. The entries were judged by cardiac patients and families at The Royal Children’s Hospital. Congratulations to the following winners: 0-3 years - Zara & Eli
Chloe Benn has recently celebrated her 21st birthday! We congratulate Chloe on achieving this great milestone!
.
New Babies
Congratulations and our very best wishes to all these families who have welcomed new babies in recent months.
Ryan and Hailey Hargreaves are proud to announce the arrival of HK Ryder who was born on 2nd June 2014. A little brother for Levi.
Adam and Flame Sorrell are excited to announce the safe arrival of HK Charlotte, born on 28th August. She is a baby sister for Tyler.
Steven and Lyndsey Wright announced the safe arrival of HK Finn, born 23rd September 2014.
Steven and Kellie Gleeson welcomed HK Oliver on 26th September 2014. Little brother to Zack.
4-7 years - Charlotte & Charlie
Jason and Tabitha Bassett are proud to announce the
arrival of their beautiful baby girl, HK Kirra, born on 4th November 2014.
Karl Reindler and Elise Rechichi are excited to announce the birth of HK Charlotte on 15th November. Rohi Dobell and Alan Smith are delighted to welcome
a daughter Sadie Maya, born 27th November. Beautiful
healthy baby sister to HK Alira and Heart Angel Oskar.
Sean and Danielle McGaughey's family are excited to announce the arrival of HK Ava, born on 26th December. Erik and Nicole Miskle are proud to announce the safe arrival of HK George, born on 10th January. Little brother to Hugo.
Lee Gambin and Sarah Longden are proud to announce the safe arrival of their precious boy, Charlie Benjamin Lee, born on 3rd March. A baby brother to HK Mayah.
In each edition of the magazine we like to welcome any new babies who were born in the last few 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.
Happy Birthday!
14
heart A very ‘Happy Birthday’ to all the ers mb me children and their family umn! celebrating birthdays during Aut
8-11 years - Bella & Khushi
Support Matters The support team has had a busy start to the year. We were happy to see many of our families feature in newspaper articles during Awareness Month, the spike in likes on our Facebook page was very pleasing and Super Boss Day certainly lived up to expectations. HeartKids Australia, along with a wonderful team of supervisors, ran a great Teen Camp in January – please see the article on page seven. Teen camp provides an opportunity for teens to step outside their comfort zone, gain self confidence and develop new friendships. On Super Boss Day, Sherrie rocked her inner Super Girl in costume during the morning tea. Many of the staff on Koala ward also embraced the Super Hero theme – it was great to see them dressed up bringing much-needed smiles to patients and families. Tracy and Rebecca organised a bake stall at The Royal Children’s Hospital which was a great success, selling out just after lunch. Special thanks to The Australian Cake Angels Network and Rodica’s Primal Kitchen for donating delicious cupcakes for us to sell. In March Rebecca travelled to Los Angeles for the Society of Adolescent Health and Medicine (SAHM) Conference 2015. Rebecca not only attended the conference, she and her RCH Transition colleagues delivered a workshop titled “From Patient to Professional: Implementing Youth Mentorship to Support Adolescent and Young Adult Patients to Achieve Positive Health Outcomes”. Rebecca will be sharing her learnings from the conference in future editions of the magazine. Our Youth Advisory Committee is progressing very well – please see the article on page 11 for more details. We are looking for ways to better assist our teens and young people and expand our support offerings and we look forward to sharing developments with you over the course of the year. Working with the Youth Advisory Committee we will be delivering support services and activities tailored to the needs of young people with CHD. There are many events and activities planned this year. Please remember to check the Events Calendar on our website for details of upcoming branch catch-ups, events and member activities. We are looking forward to the People’s Choice PJs Run in July. The inaugural event was fantastic last year and we’re hoping for more people to join the HeartKids team this year. You can run, jog or walk the track in PJs – it’s a great spectacle! Do consider joining in the fun, visit http://www.runmelbourne.com.au/pjsrun/ to register. Please contact us if we can assist you in any way. Tracy, Sherrie and Rebecca
Support at MonashHeart
Our Family Support Coordinator ic on Sherrie McDonald visits the clin 0pm 4.0 0pm Wednesdays 1.0 Medicine Monash Children’s Clinic, Special ) Centre (next to McCulloch House 246 Clayton Road, Clayton
Hospital Happenings Privacy Laws prevent our HeartKids Family Support staff from viewing the patient lists in hospitals. If you would like one of our team to visit you, please advise the ward clerk and/or nurse or send us a message either via email or text message.
Donations The support HeartKids provides to benefit cardiac patients and families is varied. In February we donated the following items to The Royal Children's Hospital: • daily planner charts for patients • baby dolls for the volunteers to have on hand when the play room is closed so children still have toys to play with • a tricycle for physio to help young patients get active • toothbrushes because dental hygiene is very important for children with heart conditions • laundry powder for families when using the washing machines at RCH.
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!
IN HOSPITAL
A special hello and our very best wishes to all the heart children who hav e been in hospital in the last three months.
15
RCH News Melbourne Heart Clinic for Kids Stage 2 of The Royal Children’s Hospital redevelopment is complete and one aspect of the new area is the opening of a new private paediatric cardiology service. The brand new practice is located at level 3, 48 Flemington Road, adjoining the main RCH building. After three years of planning, the vision of Cardiologists Andrew Davis, Bryn Jones, Lucas Eastaugh and Michael Cheung has become a reality and they are proud to announce the opening of the Melbourne Heart Clinic for Kids.
Melbourne Heart Clinic for Kids partners (from left) Lucas Eastaugh, Andrew Davis, Michael Cheung and Bryn Jones.
The clinic has been developed following frequent enquiries from families and medical colleagues about the provision of private cardiology services. Staffed by cardiologists from The Royal Children’s Hospital and supported by dedicated paediatric cardiac technologists, they provide private cardiology consultations in conjunction with same day testing. The clinic offers echocardiography, ECG and Holter monitoring services with the aim of providing the highest quality service, in a more relaxed and less time-pressured environment. An important part of the clinic setup has been that all clinical information will be integrated with The Royal Children’s Hospital system, maintaining continuity of care for children and families with congenital or structural heart conditions. Further details of the clinic team, referral pathway and contact details can be found at the website: www.mhck.com.au
Looking in at Melbourne Heart Clinic for Kids
16
Thanks to Melbourne Heart Clinic for Kids for providing this article.
World first app to make medical imaging less stressful for kids A world-first app for children that will help reduce anxiety and the need for anaesthesia during medical imaging procedures was launched by The Royal Children’s Hospital Melbourne (RCH) today. The free, game-based app, named Okee in Medical Imaging, helps children aged four to eight years prepare for all medical imaging procedures, including X-ray, CT, MRI, ultrasound, nuclear medicine and fluoroscopy. The app is designed to reduce anticipatory fear of imaging procedures, while helping to ensure children attend imaging appointments equipped with the skills required for efficient and effective scans to be performed. RCH Educational Play Therapist, Siobhan Greene, who has worked with patients and families in the RCH Medical Imaging department, said research showed children who were prepared for their procedures coped better. “Medical imaging procedures often require children to perform simple skills such as holding their breath, keeping still or drinking a special fluid called contrast,” Siobhan said. “By encouraging children to practice these skills with their families at home using a fun and engaging app, we can improve the patient’s experience when they arrive at hospital,” she said. The RCH Medical Imaging department performs over 84,000 scans each year. Fiona Ramanauskas, RCH Medical Imaging Technologist, said she expects the app will significantly reduce procedural anxiety and bolster the support patients and families receive from the department’s one dedicated play therapist. “When children are not well prepared for an imaging procedure, they can become anxious and non-compliant. This means images take longer to obtain and can result in the need for sedation or for the examination to be cancelled. This can be frustrating for the patient and their family, and delays clinicians who require the results of the scans before they can administer treatment,” Fiona said. “The app aims to help families feel more comfortable and confident about the medical imaging experience. Clinical care will be improved by reducing delays, reducing sedation and general anaesthesia, and enhancing the quality of the images obtained thanks to children’s increased ability to keep still and calm,” she said. The app is underwater themed, in keeping with the wayfinding artwork within the RCH Medical Imaging department. Main character, octopus Okee, and his sea creature friends introduce children to the various medical imaging modalities via entertaining and informative games. The app also features preparation videos, photos of the Medical Imaging department and descriptions of the procedures, tailored for parents. “We’ve worked really hard to ensure every element of the app is beautifully engaging with friendly characters, games that you want to play over and over, and helpful videos that show children what to expect when they visit the hospital,” said Siobhan. “We road tested the app with children throughout the development process to make sure they felt the same way we did and, pleasingly, they did.” said Siobhan. Okee in Medical Imaging is available free in the App Store and Google Play. The app was designed by the RCH Educational Play Therapy, Educational Resource Centre and Medical Imaging departments, in collaboration with digital agency, Conduct. Funding for the app’s development was provided by the RCH Foundation. Thanks to RCH Corporate Communications for providing this article.
17
Reflections Grief - One Mother's Experience The grieving process is horrific for all parents, male and From the moment a woman finds out she has a baby growing female, and varies according to each person’s personality and inside her, her life changes forever. Physically and emotionally the coping mechanisms they choose to deal with the loss. life can never be the same from that point on. Physically Generally women are more emotional beings, and tend to find there is the change of diet, hormones, the side effects that it comforting to talk to their loved ones about what they are may come from the pregnancy like morning sickness; and the feeling; whether it be their partner, a friend, their own mum obvious changes that occur with body shape. But the emotional or a counsellor. However this exposes them to much more attachment which is formed is really what transforms you so that vulnerability. Experts agree that being able to communicate fundamentally this child is part of your being. Mothers don’t your emotions and seek advice, or even have someone to just wait to make plans when the child enters the world; they make listen, is much better than bottling it up inside. However this plans when the baby enters their womb. does not mean that because it’s better, it’s easier. In fact this When losing a child a mother’s grief is so intense because she can be one of the hardest things a mum encounters when has carried the baby and the child is essentially a ‘part’ of her. losing her child. Talking about ‘what happened’ is extremely It’s a privilege that mums experience when pregnant that is so difficult and requires much courage, as she’s reliving the precious, and helps to generate a connection between mothers experience every time she explains it. Even just reminiscing and babies - that is the essence of motherhood. This is when is excruciating because, simply put, she just misses her child; ‘mother’s instinct’ is likely to develop, and is accentuated as she wants her child with her, alive and time passes. well, and living their life to the fullest as The depth of the love may be instant 'To a mother, no matter how many they should be. In effect this may stir up and intensifies as the baby grows in negative emotions, which can potentially distractions she has throughout your belly; and the bond that is formed be very destructive. Feelings of guilt at her days working, chores, looking is miraculous. And then when they are not being able to protect their child; after other children and keeping the born and in your arms, that feeling of anger at the unfairness of it all; apathy household running she can never unconditional love can be so deep that and a sense of futility; resentment stop thinking about the child she it is overwhelming, and you realise your and the inability to move forward has lost, and everything stands as a job is to love them and protect them are common. Therefore in facing her reminder of what could have been.' from any harm for the rest of their lives! emotions, she is exposing herself to the But what if you cannot protect them? suffering that these feelings evoke. What if your child is taken away from To a mother, no matter how many distractions she has you forever? Is it then any wonder that when a mother loses a throughout her days - working, chores, looking after other child that the grief is so debilitating that she never recovers? children and keeping the household running - she can never The anguish and torment is unbearable, and the damage is stop thinking about the child she has lost, and everything irreparable. It’s as if a vital organ has been removed and she stands as a reminder of what could have been. There is never cannot function ‘normally’ without it, for she is broken. A part that complete, unreserved peace within her, for she lives and of her will always be missing, and nothing in the world can breathes the loss of her child. ‘It doesn’t get better, it just gets ever fill the dark space that is now a permanent fixture in her different.’ composition. Around her she could hear the chaotic noise of the party; “A small part of me died with her that day, and it’s a part of people chatting and eating, laughter, and in the background, me that I will never be able to mend or retrieve. I have just the sound of children squealing and playing innocently like learnt to live with the pain.“ children do. But the silence in her head was deafening. The sense of loss and anguish is beyond description, for words All her surroundings were familiar. She was ‘present’ yet pale in comparison with the intensity of the devastation felt. she was miles away. Her smile was visible and materialized The loneliness, the aching in her heart which consumes her automatically on cue; and she nodded in response to the entire soul, is something that causes lifelong effects, and in conversation. Any words she contributed seemed to bypass no way can she be the same person she used to once be. In her brain and appeared as if from profound thought. Yet if my experience, and from the many women I have spoken to you looked deep into her eyes you could see that she was who have had the misfortune to experience this type of loss, distant and detached. There was a sadness that was a part of one of the hardest emotions to deal with is the yearning for her now that, although disguised, was very real. that child which never ceases no matter how much time has As she glanced outside at the children playing, she imagined passed. In truth, it only deepens with time and reinforces that her little girl, skipping and playing alongside the others, sense of feeling lost. The desperate longing to want something her hair swaying from side to side in the wind. Imagination back that you cannot have, is one of the most difficult things had become her reality. She smiled at the image, oblivious to deal with, and can often prolong depression and any sort of to the tears that rolled down her cheeks. It did not make a ‘recovery’. I use the word recovery very loosely, as grief never difference how much time had passed. No matter where she ends, it simply changes. It needs to change if there is to be was, what she was doing or how busy her life had become, life for the mother beyond the loss of her child. That is why her little girl was always with her.... as were her feelings of many mothers find comfort in rituals, marking anniversaries loss and of yearning. She accepted that life would always be and significant dates and talking about the child they have lost, bitter sweet. And that’s just the way it was. in order to keep the memory of that child alive. However her Written by Christina Georgiades sense of helplessness is enormous; and sometimes whatever efforts she makes are simply not good enough to help her ease the immense sadness.
18
Reflections "I Hear Each Tear" My mom doesn't know I'm watching her, but I'm watching her just the same. And I hear each tear fall on her face at the mention of my name. She says it sounds like music to her ears and can be heard over a crowd. Oh, I hear each tear fall on her face, when my name is said aloud. I watch her stumble through each day as she wishes the day would end. And I hear each tear fall on her face as she talks of me with her friends. But there are few who truly understand. Oh this I've heard her proclaim, and I hear each tear fall on her face, Will my mom ever be the same? I know that her smile can light up a sky, But I don't see that smile today. Oh, but I hear each tear fall on her face, Her blue skies have turned gray. Oh I send to her my warmest hug with the rays of the morning sun. Then I won't hear a tear fall on her face, for I shall erase them one by one. Yes, my mom doesn't know I'm watching her, But I'm watching her just the same. And if I hear a tear fall on her face I'll just softly mention her name. By Grieving Mothers
In Memory of Mal Cooper 5 April 1923 – 7 March 2015 HeartKids Victoria Mal Cooper was a long term supporter of with CHD. born was in, Mart after his grandson, Sam HeartKids, he Mr Cooper not only personally donated to introduced and was passionate about raising awareness masons and Free The HeartKids to Heartbeat Galen Lodge, HeartKids. to ort supp cial The Shriners who all provided finan on and We have been very grateful for his contributi send our condolences to his family.
Thinking of You
Heart Angel Remembrance We remember these Heart Angels whose birth date or anniversary is in the Autumn months.
Birth Dates Kiera Ziegenhardt 2nd March 2010 Finn Adair 4th March 2006 Eli Thomson 7th March 2012 Thomasina Brasier 8th March 2012 Stacey Pye 18th March 1994 Portia Grimbos 22nd March 2010 Adem Urban 23rd March 2013 Bryce McCartney 25th March 2011 Matilda Harrison 26th March 2009 Noah Bannister 29th March 2004 Mary O'Keefe 1st April 2005 Xavier Samu 3rd April 2002 Emily Cook 9th April 1994 Daniel Kabrovski 19th April 2000 Darcy Bartlett 5th May 1992 Sarah Inkster 10th May 1992 Eashana Sanmogam 12th May 2009 Asha McNamara 16th May 2011 Raphaela Perrin 19th May 2010 Cameron Varro 30th May 2010
Anniversary Dates Matilda Harrison 1st March 2011 Paige Berry 19th March 2012 Alisha Woolley 21st March 2014 Jamie Starkey 27th March 2014 Eli Thomson 30th March 2012 Emily Cook 1st April 1999 Noah Bannister 7th April 2004 Cameron Varro 10th April 2011 Hope West 12th April 2013 Jonathan McGrath 13th April 2008 Eve Higgins 14th April 2013 Stacey Pye 17th April 2007 Max Barker 27th April 2008 Ethan Hanley 28th April 2010 Portia Grimbos 30th April 2010 Darcy Bartlett 30th April 2009 Jessica El Hassan 4th May 2012 Bryce McCartney 19th May 2011 Amy Dawson 20th May 2010 Bryce Ibbs 25th May 2004 Mia Campbell 26th May 2010 Stephen Buckman 27th May 2010
Our thoughts and prayers are with the families and friends of all Heart Angels in their time of loss.
19
HeartKids Families... Kiwanis Picnic Day at KidsTown HeartKids thank Cheryl Alexander and the Kiwanis Division 7 Clubs for once again organising the annual family picnic and fun day at SPC Ardmona KidsTown, Mooroopna. Families were able to share a relaxing lunch with other HeartKids families in beautiful weather. The fun day included a goodie bag, jumping castle, face painting, snow cones, biscuit decorating, tattoos and a nail polish session and numerous KidsTown activities, including big slides and an adventure playground. HeartKids would also like to thank: • SPC Ardmona KidsTown • Crackles the Clown • It’s Partytime Jumping Castles • Mooroopna Fire Brigade • Jayden Alexander (for coordinating the tattoos) • Ebony Alexander (for the nail polish activity) • Bill Bloomfield of Iceberg cool rooms • Christine Hilton from Mooroopna Coles
20
...Enjoying Activities Kiwanis Sponsored... Carn the Kids Clinic Jamie Macmillan, Todd Goldstein, Scott McMahon and Shaun Atley spent a Tuesday afternoon in January putting smiles on the faces of some very excited kids from LeasePlan’s Carn the Kids program. The players spent the afternoon honing the footy skills of more than 50 kids. Macmillan was delighted to play his part in a fantastic initiative. “To see all the kids enjoying their time at the club so much is always rewarding for the guys,” he told NMFC.com.au. “They always have a great time at the Carn the Kids footy clinic and it’s really satisfying to give back to them and remember what we play football for. It’s not just about playing games and training - the young fans are just as important.”
LeasePlan’s Carn the Kids program in partnership with North Melbourne helps give fun experiences to children who wouldn’t normally get the opportunity to do simple things many of us take for granted. LeasePlan works with some of Australia’s most respected children’s charities to facilitate the program, including; Camp Quality, HeartKids, Very Special Kids, The CREATE Foundation and Variety to name a few. The players made sure the time the kids spent at Arden Street was unforgettable, taking all 50 kids on a private tour of the facilities, including the players’ gym and locker rooms. LeasePlan’s Carn the Kids program has entertained more than 23,000 kids and carers at Fun Days Out in every state and territory of Australia, since 2003. In 2015, North Melbourne and LeasePlan’s Carn the Kids program will host four memorable days at the footy in Melbourne and Adelaide. For more information about LeasePlan and the Carn the Kids program, please visit – www.leaseplan.com.au
21
Thank you for your recent gifts... 2040club Ample Café and Bar Anne Danks Trust Arthur Gallagher Atkinson, Anita Aussie Coupes.Net Austin, Monica A ustralian Communities Foundation Bardot Junior Bellarine Shopping Centre Belvedere Park Post & News Biggin & Scott Fund Blyth, Peter & Emma B roadmeadows Shopping Centre Cawte, Michael City of Greater Danadenong Costas, Creton
Crust Pizza Drew, Tammy Encoo Epic Photography F ederation University Australia, Ballarat Fernandez, Dean Flavour Café Ghobrial, Melissa Gibson, Libby Godfrey, Adrian Gruber, Maria Inglis, Alison Investa Jet Couriers KGROUP Pty Ltd Kiwanis Club of Melbourne Louisa Logovick
Magistrates' Court of Victoria Manenica, Ante & Ann McCasker, Kim Multi Direct Nasserallah, Bishoy National Australia Bank Ltd Parkville Store P harmasave Northcote Pharmacy Pinner, Kelly Price, Matthew Prigg, Adam & Erin Queenscliff Kindergarten Quinane, David Ray, Paul Richardson, Kelly Ritchies Stores Rodica's Primal Kitchen
Rymen, Susan Smith, Kylie S outhern Cross Computer Systems Specsavers - Altona Meadows Specsavers - Brunswick Star Pharmacy Stevens, Kristie SureNet Solutions T asTAFE Client Services South T he Australian Cake Angels Network Timmins, Len & Teklenburg, Jo Valet 5 Western Vujaklija, Vella Wibowo, Wenny Woolworths Yarra Valley Water Z Transport Group
Financial contributions over $500 are acknowledged in this column.
Entertainment Books
We are pleased to announce that we are selling the new 2015- 2016 Entertainment™ Books and Entertainment™ Digital Memberships as a fund-raiser for HeartKids Victoria/Tasmania. For only $65, Entertainment™ Memberships are packed with hundreds of up to 50% off and 2-for-1 offers for the best local restaurants, cafés, attractions, hotel accommodation, travel, and much more! Available as a traditional Entertainment™ Book -or- Digital Membership on your smartphone, your Membership gives you over $20,000 worth of valuable offers valid through to 1 June 2016! Please support us and order your Entertainment™ Membership on-line https://www.entertainmentbook.com.au/orderbooks/180y947 You can order books for anywhere in Australia and 20% comes to HeartKids Victoria/Tasmania.
Beaconhills College Stall On February 13th the Pakenham Beaconhills Middle school students held a Valentine's Day cake stall and raised $370.49 for HeartKids. This is the second year the students became involved after a group last year decided to raise funds in support of their friend, HK Oliver McNee. The school has several students that are heart children.
22
Bendigo Races Our volunteers rattled tins at Bendigo races on 27 February where one of the races was named the 'HeartKids Victoria Tasmania Handicap'.
Thank you to the Bendigo Jockey Club for helping us raise awareness during Awareness Month.
Emma Blyth
Emma Blyth approached her scho ol Sunbury and Macedon Ranges Specialist scho ol to hold a casual clothes day in support of HeartKi ds. The school has made it an annual event. Emma was recently asked to perf orm at the family picnic. She has graduated from school now having completed her final year last year. She asked if she could busk in support of HeartKids and she played for nearly two hours. Emma struggles in so many areas of learning but loves playing her guitar. She even featured in the opening clip on television for the Good Friday appeal last year.
Sponsors and Supporters Victorian Partners:
National Supporters: Founding Sponsor Principal Partner Major Partners
Foundation Partner Corporate Supporters
23
Diary Dates
iday Appeal 2015 y Da lf Go ity akayla Cook Char Friday 3 April - M rst Golf Club hu nd Sa y, Da lf Go Friday 17 April show Melbourne Saturday 9 May - Razzamatazz HD's & Families May - Lunch for AC Years of HeartKids 23 t Sa Celebrating 25 tKids Cup: Saturday 13 June - Hear ourne vs Sydney Swans North Melb reen' Saturday 27 June - 'Stars of the Silver Sc Gala ry sa niver HeartKids 25th An oice PJs Run, in Ch s le' op Pe Sunday 26 July n Melbourne njunction with Ru co r fo rty ber - Christmas Pa Sunday 13 Decem racecourse y lle Va e ne oo M Special Children at
Friday 3 April - Good Fr
eck inside or these events ch For more about victas.org.au to www.heartkids
MELBOURNE METRO BRANCHES Bundoora Jessica Shakespeare 0409 165 004 jess.k.shakespeare@gmail.com Dandenong Lucy (Fatima) Hussain 0430 738 820 redrosesforlucy@hotmail.com East Bentleigh Maggie Stavrou (03) 9563 7133 maggiestavrou@live.com.au Eastern Suburbs Pavlina McMaster 0438 233 414 pavlina@fastmail.com.au Janita Felici 0422 976 024 janitafelici@gmail.com Frankston/Peninsula Maxine Selzer 0421 561 958 maxineselzer@msn.com Melton Lauren Tyrrell 0424 594 757 lauren-tyrrell@hotmail.com Pakenham Joanne Arrowsmith (03) 5967 7083 joarrow@bigpond.net.au Point Cook Jonathan Mackley 0411 114 008 jonathan@mackleyhq.com Tullamarine Paige Donnelly 0424 239 964 paigeeloo@gmail.com REGIONAL BRANCHES VICTORIA Albury/Wodonga Cathie Kelly 0417 049 341 clonnie33@hotmail.com Bairnsdale Caroline Foard 0438 928 821 cfoardy@yahoo.com
go
HeartKids Vic Inc CONTACT US PO Box 803 Parkville Victoria 3052 P: (03) 9329 0446 E: heartkids@heartkids.org.au
VISIT US Suite 33 204 – 218 Dryburgh Street North Melbourne 3051
Facebook: HeartKids Victoria/Tasmania Twitter: @HeartKidsVicTas Instagram: heartkidsvictas
ARN: A0021470B ABN: 16 336 986 918
www.heartkidsvictas.org.au
Contact Details Ballarat Rohini Dobell & Alan Smith 0407 851 648 alan_17@live.com.au Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 goliathgroup@bigpond.com Clare Fountain 0418 140 347 clarefountain@netspace.net.au Nadine Daly 0413 710 342 dalys@tpg.com.au Cobram Bianca Quinane 0419 674 408 biancz1979@hotmail.com Echuca/Moama Tracey Hard 0438 962 056 tracnsteve@bigpond.com Geelong Libby Gibson (03) 5250 2439 0411 057 905 libway2000@yahoo.com Horsham Gaynor Baker (03) 5384 2280 mtbcarpentry@bigpond.com Kyneton/Woodend Amy Crosbie 0411 552 264 amy_emmett@hotmail.com Mildura Tara Williams 0416 622 751 tara_1902@hotmail.com Portland Kerry Sluggett (03) 5523 2503 0418 312 320 ksluggett@iinet.net.au Shepparton Cheryl Alexander (03) 5825 4005 chezalex70@bigpond.com Stawell Leanne Amarant (03) 5358 2945 or 0419 864 412 leanneamarant@hotmail.com
Traralgon Chrissy Ades 0400 857 813 cat_razor@hotmail.com Wangaratta Lisa Dekeling 0421 655 636 & Shane Hack 0488 221 184 lisadekeling@optusnet.com.au Wonthaggi Erin Howell 0431 702 863 howells.8@bigpond.com TASMANIA Burnie/Devonport Claire Gluyas 0408 351 661 richardsclaire@yahoo.co.uk Hobart Paul Hyland (03) 6247 8435 0418 561 504 paul.hyland1@bigpond.com Launceston Kylie Smith (03) 6393 6240 0448 983 587 kylie.smith@heartkids.org.au SPECIAL INTEREST GROUPS 22q11 The VCFS and 22q11 Foundation Maria Kamper www.vcfs22q.org.au BEREAVED FAMILIES EMAIL SUPPORT http://www.hearts-of-hope.org/ support/bereavment/intro.htm BRUGADA SYNDROME Pavlina McMaster 0438 233 414 pavlina@fastmail.com.au CARDIOMYOPATHY ASSN of AUST. Website: www.cmaa.org.au/ DOWN SYNDROME Sam Jackson 0439 360 035 mummee1973@optusnet.com.au
EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 kjsrms@bigpond.com hearts4heart - Support for Adults with Heart Disease Tanya Hall 0426 240 636 info@hearts4heart.net.au hearts4heart.net.au HYPOPLASTIC LEFT HEART SYNDROME & SIMILAR CONDITIONS www.hearts-of-hope.org Leanne Amarant (Victoria) (03) 5358 2945 Leanneamarant@hotmail.com Csaba Ovari (Tasmania) (03) 6229 8169 csaba.ovari@hearts-of-hope.org KABUKI SYNDROME Stacey McKiernan (03) 5275 1542 stacey@sakks.org Website: www.sakks.org KAWASAKI DISEASE Shirley Mates (03) 9894 1257 info@kdfoundation.org.au Website: www.kdfoundation.org.au LONG QT SYNDROME (LQTS) Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids.org.au www.sads.org.au or www.sads.org.uk/ MULTIPLE BIRTHS April Schubert 0407 551 967 (02) 6056 6448 april.schubert@bigpond.com MUSLIM FAMILIES Lucy (Fatima) Hussain 0430 738 820 redrosesforlucy@hotmail.com OVER 18’s Erin Cervelli (03) 9513 9030 PACEMAKERS Mandy Tichelaar (03) 9728 6984