Quarterly Magazine for Victoria and Tasmania
Volume 23 Issue 2
* Annual Chairman’s Report * Introducing a Managed Transition * S harpie Does It Again
Matters of the Heart Chief Executive Officer Well, as I write this another financial year has just closed and winter is well and truly upon us. Our members continue to amaze with their fantastic efforts and we at HeartKids continue to strive to expand the support that we offer. In this edition we salute some of those wonderful efforts by loyal members such as Josh Sharp and another of his unbelievable Sharpie’s Charity Challenge Foundation activities, the Makayla Cook Charity Golf Day and the annual HeartKids Night of Nights to single out just a few. We also discuss some of our new initiatives such as our focus on developing a managed transition plan for older children. You can read the Annual Chairman’s Report from our Chair, Phil Riggio, and we also introduce some of our new Regional Coordinators. We give you an update on the second annual HeartKids Cup played between North Melbourne and the Sydney Swans as well as an initiative that we are doing in partnership with luxury home designers and builders, Canny, to renovate Max’s Place. We also detail a number of upcoming events that I would really encourage you to participate in. All the work that HeartKids does can only continue if we remain financially viable and fundraising is always a challenge for all charities, not just our own. We rely on the support of our members, donors and sponsors to ensure we remain able to provide our support services and you can all help by either running a fundraiser yourself or attending one of the events that are either run by HeartKids or are staged on our behalf. Some to keep your eye out for are Cuppa for HeartKids, Hoffy’s Burpee Challenge, Skydive for HeartKids and our spring racing carnival cocktail party Hearts, Hats and Hooves. Another huge step forward is the release of our upgraded website. You can go directly to the website at www.heartkidsvictas.org.au to check it out. Not only will you notice a new look and feel but I expect you will also find it much easier to navigate and full of up to date information. I hope this Winter Edition of the HeartKids Magazine gives you some respite from the added difficulties that the winter brings to HeartKids and their families with the onset of the cold and flu season and trust you will enjoy catching up with all the news from us and your fellow members. All the best.
Terry Hopkins CEO HeartKids Vic/Tas
er Alana Gray pictured with heart Front cover: Magnificent Miss winn child Kiana Photo courtesy CLiQ Photography information for this edition. Thanks to all who sent photos and - send to: firstname.lastname@example.org ome welc ys alwa are Contributions 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
Our Team HeartKids Vic Inc Board 2012-2013 * Chairperson: Phil Riggio * Vice Chairperson: Natalie Palmer * Treasurer: Joseph Eid * Secretary: Melissa Karatjas * General Board Members: Chris Palmer Terry Hopkins Ashley Koenig Tania Tytherleigh Wayne Crofts
HeartKids Vic Inc Employees * Chief Executive Officer Terry Hopkins 0478 085 480 email@example.com * Support Manager Tracy Stanley 0478 091 773 firstname.lastname@example.org * Family Support Coordinators Sherrie McDonald 0431 544 510 email@example.com Amy Heafield 0421 518 366 firstname.lastname@example.org * Support Events Coordinator Lynette McCoullough email@example.com * Events & Fundraising Manager Bea Tomlin firstname.lastname@example.org * Office Manager Sandra Zlatanovski email@example.com * Membership/Magazine Coordinator Margaret Patullo firstname.lastname@example.org * Magazine email@example.com
this magazine is of the personal stories in Permission to reprint any other articles may be Any . rson irpe Cha the or required from the author Vic Inc. ledgement to HeartKids reprinted with an acknow ine do not imply published in this magaz Please note that articles HeartKids Vic Inc. of s view not reflect overall endorsement and may d stories represent nions expressed in chil Also note that the opi are specific to each ails det l dica me and that personal experiences to your child’s, ilar sim ear app y ditions ma case. Although the con cific information spe re mo ng uiri Parents req other details may differ. . gist ir child’s cardiolo should check with the
HeartKids Vic Inc proud ly supports children wit h heart disease and their familie s throughout Victoria an d Tasmania. For Tasmanian enquirie s - please refer to the ba ck page for our Tasmanian Branch Co ordinators’ contact detai ls.
Coming Events Cuppa for HeartKids
Date: During the months of August and September See more details below.
‘Hearts, Hats and Hooves‘ Cocktail Party Date: 15th August 2013 Time: 6.30pm – 10pm Venue: M aia Room, Atlantic, Shed 14 Central Pier, Docklands Ticket price: $85 Bookings made through: http://www.trybooking.com/55024
Race to the front of the field with our ‘fashion in the field’ trend forecast at our cocktail party: Hearts, Hats and Hooves
Date: Saturday 17th August 2013 Show times: 11am, 2pm, 5pm Location: Melbourne Convention and Exhibition Centre, 1 Convention Centre Place, South Wharf We will be booking tickets for our members to attend Circus Quirkus, which is sponsored by the Rotary Club of Preston and local businesses. Circus Quirkus is a non-animal family oriented show. It includes the amazing “Zim Boys” and Australia’s best-loved clown – Christof; a troupe of local and international performers who take the audience through traditional circus acts such as juggling, balancing, acrobatics, aerial displays and other death-defying skills. If you would like free tickets to this show, please book via www.trybooking.com/DAIO Everyone needs a ticket including babies. Contact Lynette McCoullough for further details.
In This Issue 3-4 Coming Events and Fundraisers 5 Going the Extra Step for HeartKids 6 HeartKids Helping a Managed Transition 7 Tanya Hall’s Story 8 Annual Chairman’s Report 9 2nd Annual HeartKids Cup 10 Hospital Happenings 11 RCH Cardiology Pre Admission Clinic 12 HeartKids Australia News 13 Reflections 14 Branch News 15 Tasmania News 16-17 Acknowledging Special Efforts 19 Helping HeartKids Help Others 20-22 Donations and Fundraising 24 Diary Dates
HeartKids Australia Education Day
Date: Saturday 24th August 2013 Venue: ‘Hotel Grand Chancellor on Hindley’ in Adelaide The annual HeartKids Australia Education Day is a one day seminar for families affected by Childhood Heart Disease. This year’s seminar is titled “CHD: A lifelong journey” and will be a great source of information for parents, extended families, friends and medical professionals. This year you can book and pay on our website - please don’t delay as places are limited. Speakers include Associate Prof Yves d’Udekem, Dr Jim Ramsey, Dr Michael Toon and Rebecca Peters from the Adolescent Transition Program at RCH. To register, and for more information, please visit https://www.heartkids.org.au/education-day-registration-page/
HeartKids Cuppa Campaign is just around the corner! Why not consider hosting your own Cuppa for HeartKids event throughout the month of August or September with a group of friends, school class, playgroup, daycare or at your local community group? Enjoy morning or afternoon tea with some friends whilst raising money for families with children who are battling heart disease.
Starts Augu st 1st!
Register now at www.cuppaforheartkids.org.au to receive your Cupp C a packk 3
Events and Fundraisers Coming Events Continued... Hoffy’s 24hr Burpee Challenge
Date/Time: Saturday 7th September, 1pm for entertainment (live cover bands, celebrities, motivational speakers); come at 2pm to support Julie Hoffman in the final hour of burpees at ‘The Middle’, Ferntree Gully Hotel, 1130 Burwood Hwy, Ferntree Gully. Entry by Donation - Adults $10, Kids $5; pay at the door. 100% of proceeds to be donated to HeartKids.
Date/Time: Saturday 14th September, 6.30pm till midnight Venue: The Palladium Ballroom at Crown Tickets: $295 per ticket or $2850 for a table of 10 To book, email firstname.lastname@example.org For further details www.fashionaid.com.au
Candlebark Farm Family Camp
Date/Time : 5pm Fri 20th – 3pm Sun 22nd September Venue: Candlebark Farm, 531 Healesville-Kooweerup Road, Healesville (60 kms from Melbourne, 6 kms from Healesville). HeartKids members who have a heart child or heart angel are invited to register their interest in attending a family camp at Candlebark Farm. Your family will have a relaxed, fun weekend and you will be able to meet other HeartKid families. Accommodation is Camp style their with bunk beds; 6 bed rooms and 8 bed rooms available, all with u .com.a arkfarm andleb www.c : website See toilet. and own shower to Please note: If we are not able to cater for every family who wants family d attende not have who attend, we will give priority to families camps before. Please only register your immediate family so we can is accommodate as many HeartKids families as possible. As this camp no is there 6, Division of Clubs Kiwanis the by red sponso generously cost for accommodation and most meals. RSVP Friday 2nd August 2013. Please indicate your interest by booking on www.trybooking.com/DAJH For further details please contact Lynette McCoullough.
The Phoebe Festival - A weekend of music and family fundraising at Kilmore Trackside
• Friday October 4, Rock concert. Music Style: LOUD • The Phoebe Foundation Luncheon, Saturday October 5 from 12 to 3:30pm featuring The Mudcakes kiddie-rock duo, raffles, silent auction & car raffle • Saturday October 5, Rock concert featuring an evening with Tim Rogers and friends the All proceeds go to establishing a new music therapy program for ing expand l, Hospita n’s Childre Royal The at Wards Rosella and Koala play therapy & nursing training programs. Visit thephoebefoundation.com.au for ticket booking information
Box Hill Miniature Train Day
Date: Saturday 12th October, 2013, 11am – 1.30pm Venue: Corner Elgar & Belmore Roads, Box Hill North. Melways: 47 B4 Thanks to the Kiwanis Club of Waverley and the Box Hill Miniature Train Society, we are able to offer our families a free fun day out. at Meet in the playground at 11am, enjoy a free sausage sizzle lunch . 11.30am and free train rides between 12.30pm and 1.30pm To register for this event, please make a booking by Saturday 28th September at: www.trybooking.com/DALC as Please only book for your immediate family so we can accommodate Lynette contact many members as possible. For further details please McCoullough. 4
Skydive for HeartKids Saturday 26th October (10am - 4pm) at Barwon Heads Aero Club, with Melbourne Skydive Centre. 1. You can jump from a variety of heights, right up to 14,000ft. Amy Emmett did her first jump there in February. She said, “It was an amazing experience. The team are very professional and I can highly recommend them.” 2. Here’s how you can get involved: Check out http://www.melbourneskydivecentre. com.au for more information 3. To confirm your place in the HeartKids team, pay a non-refundable deposit of $110.00 on our everyday hero page on the following link, http:// www.everydayhero.com.au/Skydive_for_ HeartKids, with password: heartkids 4. Share the link with family members and friends, and gather donations. Once your donations reach $1000.00 - your jump is FREE! So jump for us, spread the word and support HeartKids!
Myuna Farm Day
Date/Time: Sunday 27 October, 10am to 2pm Venue: Myuna Farm, 182 Kidds Road, Doveton Entry to the farm is by gold coin donation (per family). The Kiwanis Club of Sunbury is pleased to offer our families a great day out at Myuna Farm. Your family will receive free train and pony ride tickets and you will be able to visit the animals in the farm including the baby nursery. A free sausage sizzle lunch will be available, providing an opportunity to meet other families. You can also bring along your own snacks/lunch if you prefer. This event is for immediate family only as places are very limited and we would like to accommodate as many HeartKids families as possible. Bookings via www.trybooking.com/DALH Please RSVP by 11th October, and please contact Lynette McCoullough for further details.
Date: Sunday 10th November Venue: Various Victorian airports; Tasmania tbc Time: This event runs from 9.30am – 3pm. Arrival time is between 9.30am and 12noon, with lunch served at 12noon. The last flight is 3pm. Child friendly activities will be organised at each aero club and will vary from club to club. Please check our website for more details - you will need to register your Expression of Interest by Saturday 5th October. Preference will be given to those who have not attended before. Please contact Lynette McCoullough for further details.
Christmas Party - Melbourne
Date/Time: Saturday 7th December, 11am – 3pm Venue: Moonee Valley Racing Club, McPherson Street, Moonee Ponds.
Booking details will be provided at a later date – please keep checking Facebook, our website or see details in our Spring magazine. Keep the date free!
Going the Extra Step for HeartKids Josh Sharp has completed his 9th annual Charity Challenge, by trekking the Kokoda Track with his father, Ian, pictured below. Josh has planned this event in memory of friends and family members, as well as showing his commitment to HeartKids due to his daughter Zahara being born with a heart condition, Tetralogy of Fallot. His aim was to raise funds and awareness for children with heart conditions and also show gratitude for our troops here and abroad who risk their lives for our freedom. This year the two major charities to benefit are HeartKids Victoria & SoldierOn. We say a sincere Thank You to Josh for both his effort and the donation of $13,000.
Day 4 – 12/5/13 (Nauro to Menari) Very tough start to the day with a 3 hour trek through swamp land, a river crossing and then an extremely tough climb called “THE WALL” (yes, it looks like a wall in front of you at the bottom of it). Arrived early into camp/village (Menari) which has about 400 people. The good weather allowed for a swim in the river! Day 5 – 13/5/13 (Menari to Efogi) Early start as usual with a nice climb up to Brigade Hill where 101 Australian soldiers lost their life. We had an emotional service for the fallen soldiers. We then left to climb to 1500 metres at a fast pace with a dip in the river on the way up to an amazing village with mountain views. Day 6 – 14/5/13 (Efogi to 1900) Left the village with an amazing hill top view to visit one of the last remaining Fuzzy Wuzzy from the war. Ascended to 2000 metres and went through a moss forest which looked like it was right out of Avatar! Camped at 1900 metres with a massive bonfire. The campsite is on a field where there were skirmishes between the Japanese and Australians and four Japanese soldiers’ remains were found on this campsite in 2008.
In his diary, Josh has written: Day 1 – 9/5/13 (Port Moresby to Dump 66)
Day 2 – 10/5/13 (Dump 66 to Ioribaiwa)
Day 7 – 15/5/13 (1900 to Eora Creek)
A massive hike straight up followed by a very muddy descent. Conditions are tough with the track very muddy (clay like) and tree roots everywhere. There were twenty-two river crossings today! The hard climb up to camp was rewarded by a very cute village at the top of a cliff.
Headed to the highest point on the track today being 2190 metres. The night was cold and so was most of the day walking through the forest. We covered about 16km today which took about 8 hours. We arrived at a small camp site with a strong river beside it. We had a freezing cold bath in the river and retired to camp. Many soldiers were killed on this part of the track.
A 1200m climb today! 9hour day with a minute’s silence at the top of one of the battle fields (Ioribaiwa Ridge). Tough conditions today with a very muddy track, again clay like with many tree roots.
VC (Victoria Cross) was killed. It was a long day of trekking and we passed many villages along the way as well as passing a few landslides that happened last month during heavy rain season. Day 9 – 17/5/13 (Isurava to Kovollo) Probably the easiest of all the days with a stroll down hill towards the village before Kokoda. We bathed in the nearby river before heading to camp. Played touch rugby with the locals for some fun in the village before a massive rain storm took hold for about 3 hours! We also received our certificates for completing the track. Day 10 – 18/5/13 (Kovollo to Kokoda to Port Moresby) Left the last camp site for the Kokoda airfield. After about 5 minutes we were hit by heavy rains and were soaked as we were on day one. We finished under the arch and the Kokoda war memorial. Got to the air field and the clouds/fog were too low for a landing so we had to wait about 4 hours for the weather to clear. The very light plane arrived on a very muddy/ grass runway. We said our goodbyes and we were off to Port Moresby where we had a nice warm shower and some cold beers at the Yacht Club.
We left Port Moresby for the Bomana War Cemetery. After we paid our respects we headed to the start of the Kokoda trek at Ower’s Corner. The weather was very HOT and humid to begin the trek. After about half way through the day’s trek it started to bucket down with rain for about 2 hours. The track was very muddy, so once we arrived at camp we washed up in the river. Lucky me as I was the first Leech casualty. The night was mild depending on who you are as the humidity was still high. Every day from here on in is a 5am wake up!
Day 3 – 11/5/13 (Ioribaiwa to Nauro)
Josh Sharp with his Dad, Ian, on the Kokoda Track in Papua New Guinea
Great trip, challenge and experience with some great memories. I must also give a special thanks to Wayne at Kokoda Spirit who has great knowledge of the track!
Day 8 – 16/5/13 (Eora Creek to Isurava) We headed to the Isurava battlefield today where we had a service for the fallen soldiers as well as where Bruce Kingsbury
HeartKids Helping a Managed Transition Adolescent transition is a process that patients of The Royal Children’s Hospital (RCH) go through resulting in a transfer to an adult health care service. This can be a difficult time leaving the security of the RCH which has been like a second home – to both patients and parents. Transition coincides with a busy time in an adolescent’s life – graduating from school, awaiting VCE results, applying for a job, going to University or TAFE, possibly moving out of home and becoming independent which means managing your own medical condition and medications. It’s also a difficult time for parents adjusting to the fact they are no longer managing their child’s health care.
hearts 4heart is here to suppor t adults with heart diseas e in a numbe r of ways includi ng: • Provid ing one on one suppor t • P rovidin g online forums /virtua l commu nity for cardiac patien ts, familie s and friends • P rovidin g assista nce to adoles cents with their transit ion into adult hospita ls • R emovin g the sense of isolatio n and promo ting living a healthi er, happie r life • R espond ing and seekin g to resolve cardiac related enquir ies for our memb ers • O ffering resourc es and educat ion aimed at preven ting hospita lization • P rovidin g inform ation on manag ing anxiety and depres sion • C oordin ating Nation al suppor t and networ k groups • R aising awaren ess about heart diseas e in young people • P rovidin g accura te inform ation from medica l expert s • P rovidin g inform ation about researc h progra ms our memb ers may wish to be involve d in • A dvocac y - increas ed awaren ess of the issues faced by people with heart diseas e
HeartKids is working closely with staff at The Royal Children’s Hospital, Royal Melbourne Hospital and hearts4heart (who do similar work to HeartKids but for young adults) to develop programs to enable the transition process to be as smooth as possible. We will start publishing a Transition based article in each issue of our quarterly magazine and please keep checking our website and Facebook page for further Transition based information and events. Tanya Hall is the founding CEO of hearts4heart and she works very closely with our Support Team at HeartKids. You can read her story on the opposite page.
If you would like more inform ation on what we do and how we can help, please go to our websit e: www.h earts4 heart.n et.au These service s will preven t patien ts from slippin g throug h the cracks in the medica l system , reduce the risk of second ary events and encour age ongoin g manag ement of their illness. We have been thrilled to have been workin g with HeartK ids and wish to continu e in the long term for the benefi t of all memb ers and their familie s. For many reason s I am gratefu l for my diseas e. I have had the chance to have a true unders tandin g of what others go throug h. I unders tand the difficul ties of living with a diseas e that no one knew anythin g about. I have the chance to help others and have been lucky enoug h to find that thing that I am passio nate about in life. Tanya Hall CEO, hearts4 heart
Families Get Together Some families who had heart children born in the 1990’s or earlier met to have lunch together in May. It was a great day and everyon e left with plans to get together again soon. The group included some inspiring young people and adults who are managing their heart health issues while they work and study. Amongst the families present were some of the parents who volunteered on the management committee in the early years of HeartKids Victoria including Carol Bosward, the Founding Preside nt. Thanks to Tania Tytherleigh, mother of a heart teen, who attended representing the current Board.
Tanya Hall’s Story My name is Tanya Hall and I am the CEO and founder of hearts4heart, a national support network for adults living with heart disease. Up until now there has been no support for young adults living with heart disease and they have often felt alone, isolated and with little control over their illness. I have felt the same way. I was born with a hole in my heart and a heart murmur. Whilst a lot of people can live with a hole in their hearts — and some holes even close up — mine just kept getting bigger. I was always out of breath; my lips would turn blue and I was frequently unwell. I had open heart surgery at the age of nine. Whilst we were told that I should not have any further issues after the operations, leaving it so long caused a lot of damage. At 21 I had my first ‘episode’. I awoke feeling as though I was having a heart attack. I was vomiting and my heart was racing at two hundred beats per minute. I was experiencing chest pain and felt as if I was going to faint. Somehow I made it to my doctor’s surgery, where it eventually stopped. This was followed by twelve more years of heart-related incidents, with my heart getting progressively worse to the point where I was visiting emergency departments weekly. After a series of failed medications I was lucky enough to be referred to my Professor who specialises in Electrophysiology. I have since had five heart procedures, my most recent one in December when I had a pacemaker fitted. My condition continues to be a managed illness. During this time, I was feeling at a loss as to where my life was headed. I had no idea what my future held. I felt completely isolated and I felt that no one understood me. Work colleagues didn’t understand why I would be okay at work one day and in hospital the next. Friends and family distanced themselves from me and often I was alone. I lacked advice on how to improve my health and emotions. I have struggled to support myself and have had to still work to pay the bills, often when my health was not up to it. I had searched for a support group or forum, but I couldn’t find anyone to talk to who was in the same situation as me. After my experience, I didn’t want to sit around and feel helpless. So I decided to do something about it. I started hearts4heart to make a difference in many ways. Broadly speaking, these are: • To raise awareness of heart disease — the biggest killer of all age groups. • To support, educate and empower young adults with heart disease. • To save lives. I had worked with numerous charities and I knew the type of help that was available for those who suffer from illnesses such as cancer. I had decided that whilst in
recovery I would build a website for likeminded people with cardiac health issues to contact one another, offer support and share information. I figured that it would be easy enough to manage until my health got better — when we would expand to offering support on a greater level. So I started doing my research and began writing the content of the website. As soon as I was able, I began knocking on the doors of all those affiliated with heart disease such as The Heart Foundation, Baker IDI and HeartKids. I explained what hearts4heart was about and suggested that we would be able to reach a greater number of people by working together. They too recognised a huge gap in support for adults with heart disease. Although it is the biggest killer for adults and the biggest cost to our health system, there was still no support available. The more research I did, the more I was amazed by this. In April 2012, hearts4heart became a registered charity. Since then we have been incredibly busy, growing at an enormous rate, due to the huge demand for support for cardiac patients. We have built a skilled and experienced board of directors and have fundraising committees around Australia. We are also currently providing support for members all around Australia too. We have been very busy writing programs, working towards support groups within the hospitals and working with HeartKids. We have also held fundraising events such as, ‘Feel The Beat’ 1 and 2. They were a huge success and whilst Feel the Beat had a serious side of raising awareness and letting people know that support is finally available, it was our focus to engage adults with heart disease and link them with like-minded people. We have established a close relationship with HeartKids Victoria over the past few years and are really excited by our shared goals. I regularly meet with CEO Terry Hopkins who has been an amazing support to us, as have the Family Support Coordinators based at The Royal Children’s Hospital. Tracy and I are working closely, writing programs to help adolescents with some of the issues they may face including transitioning into the adult hospitals. We also envision providing combined events with HeartKids/ Adolescents with a focus on empowerment, managing their health, social engagement and relationship building. Adults suffer from a number of different issues than children do and it is important to educate and prepare ourselves for what lies ahead. We need to empower adolescents to learn to manage and understand their illness, and make the most of the life that they have been given. I very much look forward to working with HeartKids and many of you, whom I haven’t met yet, in the future.
Annual Chairman’s Report The last year has been a significant one in the development of HeartKids Victoria and, indeed, the whole national HeartKids network. Your board has been working hard behind the scenes to set the direction for the future and to ensure that we are well-positioned to take the organization to the next level. I would like to take this opportunity to explain some of the challenges and highlight some of the important achievements. It should be said at the outset that all of our activities are directed towards the one goal of increasing the level and quality of support that we offer to families and improving outcomes for heart children. This is why we advocate for the needs of families with heart children, try to increase awareness in the community and support research projects via the excellent Grants-In-Aid program conducted by HeartKids Australia and via our own annual bursary. Those of you who have come into contact with our Support Manager, Tracy Stanley, and her team of Family Support Coordinators, will know what dedication and commitment they bring to their roles. As a board, we are proud that they are the “face” of HeartKids, and we are delighted to have been able to extend their hours of availability at both The Royal Children’s Hospital and Monash Medical Centre in recent months, as well as extending the Support events and membership services we offer. Our tireless CEO, Terry Hopkins, whose days often start early and finish very late, continues to make a tremendous contribution. I will not attempt to summarize all that Terry has achieved recently, but some significant accomplishments stand out. The annual “HeartKids Cup” between the AFL teams North Melbourne and the Sydney Swans has brought us much exposure in the media. The “Howie’s Place” project, providing a family-friendly portal for the provision of vital information, has proved to be a great success with over 2,500 visits to the website in its first four months of operation. The acquisition of office space adjacent to our original base has enabled us to provide an area for families to come for information and support, away from the hospital environment. Most importantly, Terry has overseen the development of a more robust office administration. When Terry took on the role of CEO, he was “chief cook and bottle washer,” looking after the administrative requirements, coordinating fundraising, building relationships, managing our support services, and cleaning up after events (among many other tasks). Fortunately, he had, and has, tremendous support from his wife, Gail, whose on-going contribution to HeartKids is greatly appreciated by the board. Last year, the decision was made to employ a full-time office manager. Sarah Currie was a great addition to our team but she resigned for family reasons in March, as did our Admin Assistant Amy Emmett. This provided us with a major challenge but, fortunately, we were able to fill the void quickly and most effectively with our current office manager, Sandra Zlatanovski, who brings a wealth of “not-for-profit” experience to the role. Sandra’s previous employment involved the development and expansion of a fledgling charity and we are confident that she has the skills we need to implement our plans for the future. Speaking of challenges, late last year we also suddenly lost our hardworking treasurer, Deborah Bowling, for health reasons. Not only was Deb a thorough and efficient treasurer, but she, like many board members, was a financial supporter of the organization. The role of treasurer is, of course, a crucial one and we were keen to fill the position in a timely manner. Fortunately, we were able to persuade Joseph Eid (who runs his own accounting, taxation and business advisory firm) to join the board. Joseph, himself the father of a heart child, had been known to us for some time as a financial supporter of HeartKids. I am personally grateful that he rose to the occasion in our time of need and that it cost me and Terry only a few hours of meetings and a couple of coffees to get him across the line.
Fundraising is always a major focus for us, as everything we do depends upon having a strong revenue stream and sufficient reserves. To that end, Terry has recently employed Bea Tomlin as our Events and Fundraising Manager. The fundraising environment is very competitive and requires a professional and structured approach. Whilst we already have some great supporters in the community, we need to put a lot of work into attracting regular income streams through regular giving, bequests and grants. Bea will be responsible for implementing the board’s fundraising strategy.
As a priority, our office team has been busy revamping our processes and systems to ensure that we are able to manage change and staff turn-overs in an efficient and effective manner into the future.
We recently signed leases for our current office accommodation, giving us tenure until the end of 2016, should we need it. The ultimate plan is to move closer to the RCH and to acquire larger premises, but the speed with which those plans come to fruition will depend on the success of our fundraising initiatives and the support of our members. About eight years ago the five state HeartKids organizations established HeartKids Australia (HKA). The relationship between HKA and the member states has been an area of focus over the last year. I have been part of a working group which was delegated the task of drafting and formalizing a “Federation Agreement” and associated documents which will regulate the relationships between the six organizations. The ultimate goal is a streamlined and standardized approach to providing “best-practice” services to HeartKids families, the sharing of resources and information, coordination of national marketing and fundraising campaigns and the professional management of research projects. Finally, a reminder that the annual election for the HeartKids Victoria board is fast approaching. There are ten board positions with each board member having tenure for a period of two years. To ensure continuity, only half the board positions become vacant in any year. We currently have a strong board with each member bringing a slightly different skill set to the table. Fortunately, of those whose positions are becoming vacant, Joseph Eid and Wayne Crofts will be renominating. Unfortunately, we are losing two of our best contributors, Natalie Palmer (Vice-chair) and Chris Palmer. Natalie has been an enthusiastic and dedicated board member for three years, Chris for two. I would like to thank them on behalf of the entire HeartKids Victoria family for their time, effort, and financial support. I would encourage members of HKV with the requisite skills to consider nominating themselves for a position on the board. The primary role of a board member is “governance,” so those with previous experience in the governance of a not-for-profit body, especially when coupled with a sound understanding of financial management and the ability to read financial statements would be a distinct advantage. Those with skills and experience in marketing and in the area of government advocacy, particularly in the health field, would be of particular value. A wide business/professional network would also be an advantage. Board members will be required to attend board meetings (at our North Melbourne office) every six weeks in addition to subcommittee meetings (about eight per year), strategic planning sessions (two or three per year) and will, ideally, attend our major fundraising events and other functions. There will also be the opportunity to attend the annual HKA Conference. HeartKids Victoria is at an important stage in its development and we look to the future with great anticipation as we seek to become the premier children’s charity. Thank you all for your on-going support. Phil Riggio Chairman
Second Annual HeartKids Cup
Round 4 of the AFL season saw North Melbourne and Sydney Swans once again battle for the HeartKids Cup. The game was held at Blundstone Arena in Hobart and this provided a great opportunity for many of our Tasmanian members to get involved and one of our wonderful supporters LeasePlan to step up and help us ensure our members had a great day. A big thank you to both clubs for supporting us so strongly and to Glenn Archer who again represented us at the event and in the media in his Ambassadorial role.
LeasePlan shows heart in Hobart with Carn the Kids Thanks to LeasePlan’s Carn the Kids program, 12 year-old HeartKid Oliver Parnham got the opportunity of a lifetime on Saturday 13 April when he led his beloved North Melbourne players onto the field as the official mascot at Blundstone Arena, Hobart. Oliver, who suffers from a heart condition called Truncus Arteriosus, has already had three open heart surgeries in his short time, still has regular visits to the cardiologist and will be on medication for the rest of his life. The game marked the second official HeartKids Cup, which will now be an annual event when the Sydney Swans play North Melbourne. HeartKids was LeasePlan’s chosen charity partner in 2012, and have since remained regular partners of our Carn the Kids events program. To help celebrate the special occasion of the ‘HeartKids Cup’, 100 kids and carers from HeartKids were invited by LeasePlan to attend the match at Blundstone Arena. In addition to being the on-field mascot at the game, Oliver was also lucky enough to visit the Roos training session on the Friday and meet the players, including 2013 Carn the Kids ambassador, Jack Ziebell - all thanks to Carn the Kids. Prior to the game, Oliver also got to rub shoulders with North Melbourne legend and HeartKids Cup Ambassador, Glenn Archer. Carn the Kids is a program which gives kids who might not otherwise have the opportunity a ‘fun day out’. LeasePlan, Carn the Kids and North Melbourne have worked together since 2009 to host kids at Roos’ games, complete with player visits, meat pies, drinks, face painting and showbags. The program also celebrated its 10th birthday and child guest number 20,000 through the turnstiles in 2012. For more information on the Carn the Kids program visit www.carnthekids.com.au
Carn the Kids
ortunity for our families to support of LeasePlan giving the opp HeartKids appreciate the ongoing Out events in Melbourne. at two recent Carn the Kids Fun Day enjoy all the excitement of the AFL Kids Photos below and right: Carn the ws Cro e laid Ade v rne North Melbou match - 26 May 2013
Right: Carn the Kids photo taken at the North Melbourne v St Kilda game - 2 June 2013
Hospital Happenings Celebrating Mother’s Day
HeartKids held a lovely morning tea for the mothers from Koala and Rosella wards at The Royal Children’s Hospital on the Thursday before Mother’s Day. Very special thanks to The Cake Angels for organising delicious sweets courtesy of Sweet Treasures by Vanessa and Cake Envy and to The 3 Minute Angels who treated the mums to massages. Thank you so much for spoiling our special mums! On Mother’s Day we distributed goodie bags and beautiful roses to the Koala and Rosella ward mothers. Heartfelt thanks to everyone who donated items for the goodie bags and to The Phoebe Foundation for donating the stunning roses. The gifts were very much appreciated.
Delicious sweets for our morning tea from Sweet Treasures by Vanessa
Beautifully decorated cookies for our goodie bags by Cake Envy
International Nurses Day
International Nurses Day is a chance 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 2013 is Closing The Gap: Millennium Development Goals. International Council of Nurses International Nurses Day is Closing the gap: celebrated around the world Millennium every May 12, the anniversary Development of Florence Nightingale’s Goals birth. tly HeartKids is constan 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. We presented the nurses in Koala Ward, Rosella Ward, Cardiac Surgery and our clinic with gifts to let them know how much we 12 May 2013 International Nurses Day appreciate them.
Nurse of the Month Award HeartKids sponsors the Nurse of the Month Award which recognises the work of our wonderful Koala ward nurses. Patients and families can vote for the nurse they think deserves recognition by placing their nomination in the voting boxes located in Koala ward. There was a tie for Nurse of the Month in April - Belinda Wilmore and Renee Beard. Nurse of the Month for May is Nikki McCrone and the award for June went to Michelle Kenez.
Abby, Jasmyn and Kiana helped organise the flowers and goodie bags
Our Congratulations and thanks to you all!
A special hello an d our very best wishes to all the heart children who have been in hospital in the last three months.
Support at MonashH
Our Family Support Coordinator Sherrie McDonald vis its the clinic on Wednesdays 1.00pm - 4.00pm Monash Children’s Clini c, Special Medicine Centre (next to McCull och House) 246 Clayton Road, Clay ton 10
RCH Morning Teas All ward, ICU and outpatient families are welcome to join us for morning tea, held on Tuesdays and Thursdays from 10:30am - 12:00pm in the Parent Lounge on the 3rd Floor. We look forward to seeing you there!
RCH Cardiology Pre admission Clinic The Cardiology Pre admission Clinic is located at the A3 desk, within the Specialist clinics, on the Ground floor of the new Royal Children’s Hospital and is co-located with the Cardiology Clinics (near the Meerkat enclosure). The role of Pre admission clinic is: • To assess your child’s heart and general health in preparation for their heart surgery or cardiac catheter. • Ensure all tests are complete. • To provide all the necessary education and information to you and your child. Your child will attend Pre-admission clinic days to weeks before the surgery or catheter is to be scheduled. Pre admission will take most of the day to complete. Plan to be at the hospital from 8.30am to 5pm for preparation for cardiac surgery or 9.30am to 5pm for preparation for cardiac catheter. Occasionally you will need to stay longer. It can be an intense day while you support your child through their tests and assessments, receive a lot of information as well as meeting nurses, resident medical officers, cardiology fellows, cardiac surgeons, cardiologists and allied health professionals who will be involved in your child’s care. (Most families could meet up to 3 doctors and 2 nurses over the course of the day). Each has a separate role in preparing you and your child for surgery or catheter. The Cardiology Pre admission nurses will coordinate the day and provide all the necessary education. There will be opportunity for discussion during the day. Printed information will be provided for you to take home. There is a lot of useful information available on The Royal Children’s Hospital Website, www.rch.org.au We recommend you do some pre reading on the hospital website before you attend the Pre admission clinic. Look for “Parent information” listed under Cardiology Department. You should find the Cardiac Surgery Manual and “Howie’s Place” useful. Information about anaesthesia, fasting and pain management will be listed under the Department of Anaesthesia and Pain Management.
“Preparing for hospital - a parent’s guide” and “Preparing your child for hospital” are listed in the general Parent information fact sheets. Take a virtual tour of the hospital. Look for Surgery Reception J, Recovery (cardiac catheter), Rosella Ward (cardiac surgery) and Koala ward. All are located on the 3rd floor. “Consent” for the surgery or catheter will be taken by the Surgeon or Cardiologist / Cardiology Fellow after discussing the procedure, benefits and risks with you. Before you attend Pre admission: • Return the health questionnaire. The information assists us to plan your child’s pre admission day. • If your child is over 18 months of age, attend a dentist and ensure that they are “dentally fit” to avoid cancellation or delays to their surgery or catheter. On the day of Pre admission please bring: • • • • • •
Medications Dental Clearance and Health Questionnaire if not already returned. Maternal Child Health book / immunization record. Favorite book, toy or DVD for distraction during tests
Snacks, drinks, formula, nappies for the day Suitable clothing that can be removed easily for tests and examination. • A shawl or blanket to wrap infants between tests so dressing and undressing frequently is avoided. We recommend that you arrange care for your other children where possible so you are free to support your cardiac child through their tests and concentrate on any discussions with the nurse, doctors, cardiologist and surgeons. Child care plans should include the possibility that the Pre admission may take longer than anticipated. We look forward to meeting you and working with you and your child to prepare for their surgery or catheter. Lyn Marshall, Paula Prosia Cardiology Nurses Cardiology Pre admission Clinic
RCH Craft Workshop atpare nts at The Royal
for We held our first Craft Workshop they learnt to make re whe e Jun in l pita Hos 's Children pompom garlands. Elgin Lane Studio and will The workshops are an initiative of be held once a month.
HeartKids Australia News The Cuppa for HeartKids campaign will be held in August and September. During these months we will be asking our supporters to host a Cuppa to raise funds and awareness for HeartKids. A variety of resources such as posters, certificates and invitations to personalize your event can be downloaded from the website. If you would like to host a Cuppa event or would like more information about the campaign all you have to do is visit the Cuppa website www.cuppaforheartkids. org.au or call (03) 9329 0446 and register your details over the phone. Registrations are now open for our annual Education Day. This year’s seminar titled CHD: A Lifelong Journey will be held in Adelaide on Saturday the 24th of August, at the ‘Hotel Grand Chancellor on Hindley’. Each year HeartKids Australia brings together leading medical and nursing specialists and allied health practitioners to share the latest and most relevant information for families affected by Childhood Heart Disease during this one day seminar. So make sure you register for this event on our website www.heartkids.org.au We have had the opportunity to work with Charter Hall who has contributed $50,000 in 2013 to fund a training and development program for HeartKids’ Family Support Coordinators. The role of a Family Support Coordinator is complex, and they frequently face challenging and emotionally draining situations. Under the program HeartKids will audit current skills, and deliver training and development to ensure the best possible service is provided to our heart children and their families. Gregory Jewellers has recently appointed HeartKids Australia and The Heart Centre for Children at Westmead Hospital as their chosen charity for their new ‘Gregory 925’ silver collection after Eden Florence Gregory, the newest edition to the third generation of the Gregory family, was born with CHD. Gregory Jewellers is one of Australia’s leading premium jewellery brands. The launch event of the collection was held at their
Jann Kingston with Edward and Kelly Gregory
Sydney store earlier this year, during which time Gregory’s presented HeartKids with a cheque for their first donation from the sales of the range. The collection can be viewed on their website www.gregoryjewellers.com.au HeartKids Australia was chosen as a minor charity partner for the Chain Reaction Challenge New South Wales 2013. Chain Reaction is the ultimate corporate bike challenge that raises money for sick children by challenging senior executives who have a passion for cycling and an awareness of their corporate and social responsibilities, to ride a 1,000 plus kilometre course in 7 days. The riders started at the MCG at 8am on Saturday 27th April and finished on Friday 3rd May at the Entertainment Quarter next to the SCG in Sydney. For more information on the ride you can visit the HeartKids Australia website on www.heartkids.org.au With best wishes from everyone at HeartKids Australia, Kind regards, Jann Jann Kingston CEO, HeartKids Australia
New Emergency ID Medical Info App Launched! for you and your family. rgency ID! The world’s best APP Carry your phone – carry your Eme n ill or distressed. Store all iled and accurate information whe It can be difficult to remember deta rmation and carry it with you! your medical and emergency info the WALLPAPER of your identifying photo can be stored as Your most urgent information and cking the phone. in an Emergency without you unlo locked screen, so it can be viewed stored in your APP, such as: All other important information is • Current Medical Conditions • Medications • Allergies • Medical History • Doctor’s Name & Contact Details ails • Specialist’s Name & Contact Det t Kep are s ord Rec l pita Hos re • Whe • Medical Insurance Details like called in an • And importantly, who you would ils. deta tact con r Emergency and thei
RYONE who carries Emergency ID APP is ideal for EVE their phone. ne – carry your Emergency ID. pho r Carry you
Reflections Heart Angel In loving memory of Hope Layla 12/2/2013 – 12/4/2013
. You were Hope, you were our little princess you will but , only with us for a short time ver. A fore s orie mem live in our hearts and lly. cefu pea ping slee now beautiful princess you went Part of us went with you the day n. We otte forg be er to sleep. You will nev of you. care d goo ng taki hope the angels are you Hope. Don’t forget we will always love Love always and forever Mummy & Daddy xxx
Heart Angel In loving memory of Eve Frances Higgins Born 15-2-2013 Died 14-4-2013 Eve, you were such a fighter and an inspiration to all who knew you. You showed us so much about love and love from the heart. Your mum, dad and sisters couldn’t have been more proud to have got to know you and your beautiful spirit!! ‘We love you to the moon and back sweetheart’ xxxx
Go ahead and mention my child, the one that died, you know. further, Don’t worry about hurting me show. sn’t the depth of my pain doe cry, Don’t worry about making me de. insi ng I’m already cryi Help me to heal by releasing the tears that I’m trying to hide. nt, I’m hurt when you just keep sile t. pretending he didn’t exis d, I’d rather you’d mention my chil . sed mis n knowing that he has bee You asked me how I’m doing, I say ‘pretty good’ or ‘fine’, ng, but healing is something on-goi I feel like it will take a lifetime. ~Elizabeth Dent~
Heart Angel Remembrance We remember these Heart Angels whose birth date or anniversary is in the Winter months.
Birth Dates Zach Beadel 5th June 2010 Jessica El Hassan 9th June 1993 Thomas Jones 13th June 2008 Dylan Grilli 15th June 1993 Makayla Cook 18th June 2012 William Fisher 19th June 1999 Emily Cole 30th June 1987 Oscar Batrouney 1st July 2009 Cohen Lewis 7th July 2007 Charli Hartley 20th July 2009 Margy Kyberd 22nd July 1967 Matilda Annie Farley 27th July 2011 Paige Berry 9th August 1995 Arlo Donnelly 9th August 2012 Kristen Potts 10th August 1997 Erinn O’Brien 14th August 2005 Jackson Walsh 17th August 2009 Benjamin La Motta 31st August 2009
Anniversary Dates Sarah Inkster 19th June 2007 Owen Crew 26th June 2007 Xavier Samu 27th June 2012 Cohen Lewis 10th July 2007 Raphaela Perrin 10th July 2010 Paul Livingstone 19th July 1992 Avelynn Wood 20th July 2012 Makayla Cook 21st July 2012 Kristen Potts 23rd July 2007 Zac Moore 25th July 2008 Matilda Annie Farley 27th July 2011 Charli Hartley 28th July 2009 Erinn O’Brien 14th August 2005 Margy Kyberd 15th August 2009 Thomas Jones 19th August 2011 William Fisher 23rd August 2003 Emily Cole 26th August 2006 Benjamin La Motta 31st August 2009
Thinking of You
Our thoughts and prayers are with the families and friends of all Heart Angels in their time of loss.
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 watch the branch news on our website: http://heartkidsvic.tas.org.au/our/support/Branch Network or follow us on Facebook for event dates.
Branch Co-ordinator updates: HeartKids would like to take this opportunity to thank Karyn Howard for being our Wangaratta Branch Coordinator over the past three years. Karyn is retiring from the role and handing over to Lisa Dekeling and Shane Hack, parents to Heartkid Eli. We are delighted to be introducing Lisa and Shane in Wangaratta, as well as introducing Coordinators for two new localities: Lauren for Kyneton and Bianca for Cobram.
Lisa & Shane - Wangaratta and Benalla
Hello from Lisa and Shane in Wangaratta. We are very pleased to be the new local branch coordinators for the Wangaratta and Benalla areas. sus with Our HK son Eli, 2 years old, was born with the rare Truncus Arterio months three at surgery heart open had He . arteries hypoplastic pulmonary more h althoug free, tion medica and healthy now is and and eight months older. gets he as him awaits heart surgery During the uncertainty of Eliâ€™s early days and heart surgeries, we found lly HeartKids to be a great source of support in so many ways. It was especia who people to speak and families ds HeartKi other with useful to be connected It family. a as through going and feeling were we what of anding had an underst them. for t suppor is for this reason we are keen to give back to others and be a
Lauren Roberts - Kyneton
when we My husband Steve and I moved to Woodend in 2010 with our son Jack 2010. were expecting our second child. Eliza was born in December not quite By the time she was 6 months old it became evident something was ory infections. respirat t recurren suffered & weight on right, as she was failing to put ASD. primum a having as She was diagnosed a few Eliza had open heart surgery one week before her first birthday. Despite and then since s progres s fabulou complications post-operatively she has made ! brother big her with up now spends all her time trying to keep area. Lauren looks forward to meeting families who live in the Kyneton
Bianca Quinane - Cobram
My husband David (also known as George) and I have a heart child named Dooley Jeremiah. After trying to conceive for almost three years, we were over the moon to find out we were pregnant. At 18 weeks we were devastated to have almost lost him. It was at the 19 weeks ultrasound the sonographer noticed some anomalies and sent us to Melbourne for further observations. It's been a constant roller coaster of emotions. Dooley was diagnosed as a TOF (Tetralogy of Fallot) baby in the womb. He wasn't a typical TOF though as his pulmonary arteries were enlarged, not narrowed, and were compressing his airways. He was also missing a pulmonary valve, he had two holes in his heart and bronchomalacia.
Doctors were uncertain whether he would breath when he was born. They were expecting a very sick baby. Dooley cried immediately when he was born on the 18th of September, 2011 and got a pair of 9's on his Apgar Test. He had major surgery on the 23rd April 2012, to insert a pulmonary valve, taper his pulmonary arteries and repair the two holes. He's been going from strength to strength since. We often hear people say "he's a tough little bugger". We're extremely grateful to all of the nurses, doctors, surgeons, staff, HeartKids and the many people including family and friends who've supported us. Dooley is now attending Family Day Care four days a week which he really enjoys. He's learning so much, building confidence and socialising with other children.
After time off here and there to help support Dooley with his condition, David is continuing to work as an Electrician at the local Murray Goulburn factory where he has worked for over 20 years. I've commenced a Diploma of Nursing course and hope to one day become a Maternal & Child Health Nurse. We hope Dooley will grow up knowing how loved he is and how special he is to us and many other people.
Tasmania News The Special Childrenâ€™s Christmas Party
Date: Sunday, 24 November 2013 Venue: The Derwent Entertainment Centre, Hobart RSVP: 25th October to Kylie Smith
e Tassie Muscle & Classic Car Cruis
Please note everyone must RSVP, even if you have attended previously. The party kicks off at 11 am and goes for 4 fun-filled hours during which the children will be treated to a star studded show featuring many local and national artists. In the past fifteen years, the organisers have been delighted to entertain the children with a multitude of performing artists. Lots of other activities will keep the children entertained such as rides, face painting, merry-go-rounds, jumping castles and much more. With all this fun to be had, the children will need all the hot-dogs, chips, drinks, fruit, lollies and ice creams that will be provided. Father Christmas will arrive in spectacular fashion even though Rudolph and the boys have the day off.
Tasmania Police Charity Trust: Annual Bike Ride
HIGH TEA SAVE THE DATE ing Our Devonport branch is organis held be to nt, eve Tea h Hig a fantastic 3. 201 ber on 8 Septem our Further details will be posted on n. soo e pag website and Facebook Website: www.heartkidsvictas.org.au Facebook: Heartkids Victoria/Tasmania to In the meantime if you would like ire Cla be involved please contact Gluyas E: email@example.com M: 0408 351 661
Acknowledging.... Magnificent Miss 2013
Alana Gray was one of thirty female participants in Magnificent Miss, winning the title Magnificent Miss 2013. Magnificent Miss is a fashion-driven event, organised by Emmanuel Ammo Hairdressing in partnership with L’Oreal Professionnel, held at The Palms Crown. Proceeds from the event benefited HeartKids Victoria. Alana works as a flight attendant where she loves interacting with different people. She is a family person and said “My Mum rocks my world”. The lovely Magnificent Miss winner is looking forward to her role as an advocate of the work done by HeartKids. She will attend events and engagements as a way to help raise HeartKids profile. She told us, “It’s going to be a fun and rewarding twelve months”. Alana possesses a positive outlook and will make a great role model for heart children. Magnificent Miss raised $3000 for HeartKids Victoria.
Hoffy’s Rainbow Run
Julie Hoffmann organised a Rainbow Fun Run at Cardinia Reservoir on Sunday 21st April. The fun run was a huge success, raising over $14,000 for HeartKids. Hoffy is hoping to make it an annual event. Over 550 participated in the event, in which they all had to complete five burpees before being sent off around the course in clouds of coloured powder. The participants had arrived squeaky clean and by the end of the run, their clothing was covered in a rainbow of colours. Parks Victoria was the major sponsor of the event and the local community really got involved and provided great support. Hoffy’s next major event is Hoffy’s 24 Hour Burpee Challenge – please see details on page 4 and in the flyer below.
....Special Efforts! HeartKids Night of Nights
It has become one of the highlights of our fundraising year, the Annual HeartKids Spectacular. This year saw the event, held at the Ultima Reception Centre and entitled The HeartKids Night of Nights, grow to an all time high in attendance with around three hundred and fifty people dressing up and stepping out for the evening. It was a wonderful night organised by the Rotary Clubs of Tullamarine and Keilor and hosted by media star George Donikian. The crowd were entertained by a fabulous array of singers from the past including, Dean Martin, Buddy Holly, Tom Jones, Austin Powers and Elvis Presley, all portrayed unbelievably well by Mark Andrew who also bought his own dancing showgirls. However, it could be argued that their dancing paled when compared to the moves being shown by
vided by Entertainment was pro rk Andrew Elvis tribute artist Ma wgirls sho al and his sensation
members of the audience who danced all night to Mark’s dulcet tones from his opening number through to his final rousing performance as Elvis. The formal part of the evening, including recognition of the organising committee and sponsors, was conducted by our former Chairperson Gary Karatjas on behalf of HeartKids. This was followed by a live auction of some wonderful memorabilia that fetched outstanding bids and helped complete what was not just a fun night but also a successful one from a fundraising perspective with around $33,700 raised. Our sincere thanks go out to the organising committee and members of the Rotary Clubs of Tullamarine and Keilor for their tireless efforts in once again making this event so successful.
The Karatjas family, Ga ry and Melissa with their daughters Mia and HK Chloe
ing, George Host of the even il Riggio, Ph Donikian, with ids Victoria tK ar He Chairman of
We thank photographer Wojciech Przybylowicz for permission to print these two photos of the event.
Makayla Cook’s Charity Golf Day Makayla Cook’s charity golf day, held at the Drouin Golf & Country Club on Good Friday was a huge success. The day was held in memory of our baby, Makayla Sue Cook, who very sadly passed away on the 21st of July 2012 at just 33 days young. We had 156 people participate in the event and with the help of volunteers, we had a sausage sizzle and drink carts on the course all day. Once the golf was finished we had food and drinks in the club rooms with comedy, a live auction and raffle run by comedian Oscar Swarv. Major sponsors included JHJ Creative Jewellery, The Drouin Golf & Country Club and 3GG. Large donations were made by Stuart Cook, Farnham Built, Clark First National Real Estate, Robertson Wouters, Andrew Patterson and Mark & Rosemary Sturgess. We are very proud to say that with support through sponsorship, donations and volunteers, we were able to raise $33,482.99 for HeartKids Victoria. We are overwhelmed with the outcome of our event and we look forward to organising Makayla Cook’s charity golf day for 2014. Leon & Jackie Cook
Congratulations and our very best wishes to all these families who have welcomed new babies in recent months.
Kane & Peggy Hooper have announced the birth of their daughter, HK Jacinta, on 6th January 2013. She is a sister to Leia and Emilie.
Darren & Catherine Wurm welcomed a son, HK Brennan, on 14th February, a baby brother to Kynan, Jedrek and Makin.
We are pleased to announce that we are selling the new 2013- 2014 Entertainment™ Books as a fund-raiser for HeartKids Victoria.
Entertainment™ Books are packed with s hundreds of up-to-50%-off and 2-for-1 offer s, ction attra for the best restaurants, cafes, ! hotel accommodation, travel and much more $15,000 worth over The new Book is only $65, and you’ll receive to do and want you of valuable offers, so you can choose what . 2014 June when you want to do it up until 1 -50%-off and 2-forEntertainment™ Books feature valuable up-to , including: 1 offers from many popular local businesses s, TGI Fridays, Red Spice Road, The Groove Train, Grill’d, Hoyt Woolworths, x, Calte AFL, d, Worl KFC, McDonalds, Coles, Sea ! more reds hund Dan Murphy’s … plus Order on-line: rbooks/180y947 https://www.entertainmentbook.com.au/orde order form: or visit our HeartKids website to download an www.heartkidsvictas.org.au
Welcome to our HeartKids VIP Supporter Club - we want to reward YOU. Imagine an exclusive club with member-only deals that reward people who loyally support and donate to HeartKids.
Christopher Walsh & Melissa Saaghy-Walsh announced the birth of their son, HK Jackson, who was born 11th April. Jackson is a sister to Olivia.
Colin Kidd & Kelly Eaton have announced the birth of their baby boy, HK Mason, on 8th May 2013.
Tim and Elizabeth Jones are thrilled to announce the arrival of Asher Luke born on 27th May. Asher is a little brother for HK Benjamin. Angelo Dal Santo and Terese Duffy are celebrating the arrival of their son, Charlie Angelo, on 9th June. He is a brother to HK Lucia.
In each edition of the newsletter we like to welcome any new babies who were born in the last three months.
If you have a new addition to your family (heart child or sibling) and would like the baby’s birth announced in the newsletter, please send us the details.
HeartKids VIP Supporter Club
Kerryn and Damian Harrison are thrilled to announce the birth of their daughter, Lucy Matilda, on 25th April, a sister to Heart Angel Matilda Kate.
Entertainment Books 2013/2014
Adam & Hayley McNamara have welcomed their baby girl, Imogen Hope, born 4th April. She is a sister to Tanner and Heart Angel Asha.
A very ‘Happy Birthda y’ to all the heart children and their fam ily members celebrating birthdays during Winter!
Well it’s here! We are pleased to introduce you to our HeartKids VIP Supporter Club. Members can grab amazing deals online that are delivered straight to your door (with postage included in the price). Browse and download a range of Australia wide coupons and be the first to know when your favourite companies upload new offers and products. HeartKids VIP Supporter Club is proud to offer all HeartKids Supporters a FREE six month Membership. To receive your HeartKids VIP Supporters Club card, please contact the HeartKids Victoria/Tasmania office on firstname.lastname@example.org or phone 03 9329 0446 and we’ll post it out directly to you.
Helping HeartKids Help Others
HeartKids is thrilled to announce a new partnership with luxury home designers and builders, the Canny Group. To launch the partnership, Canny is set to design and project manage the refurbishment of Max’s Place – three small units located opposite The Royal Children’s Hospital in Melbourne. The units provide short to medium-term accommodation for families with children undergoing heart surgery and ongoing treatment at the hospital.
The owners of Max’s Place, Heather and Tim Round, took out additional mortgages on their Adelaide home in 2002 to set up the accommodation and support network after tragically losing their son Max at just 13 days old to a heart condition. Despite having six children of their own to care for, this inspiring couple spend countless hours supporting families going through similar hardships to theirs, and still to this day often catch the bus to Melbourne to personally clean and stock the units. After housing families for more than 10 years, Max’s Place is in need of a facelift. Commencing on 2 August, the refurbishment project aims to freshen up the units and create a bright, comfortable ‘home away from home’ that appeals to both parents and children alike. The construction and fitout is due for completion by 16 August. New features and fittings include flooring, lighting, joinery, compact appliances and storage solutions, all designed with the needs of families in mind. More than twenty of Canny’s suppliers and trades supported the project, donating everything from full kitchen fitouts and bedding to board games and colouring books for the kids. “When we heard about the lifechanging work of HeartKids and the inspirational story of Tim and Heather Round, we jumped at the chance to embrace this project and make it happen”, said Canny’s Managing Director Damian Canny. Please ‘like’ the Canny Facebook page to follow the progress of the Max’s Place refurbishment: www.facebook.com/canny.friends
The Canny team planning and measuring at Max’s Place
Ritchies Community Benefit Card
When shopping at Ritchies and by using your community benefit (CB) card or tag linked to us, Ritchies will donate money back to HeartKids Victoria. These cards and tags can be used at ANY Ritchies store throughout Vic, NSW and Qld by staff and their families, friends, neighbours and so on. Use your card or tag every time you shop - even if you only purchase a couple of items, it all adds up! So if you would like to support HeartKids Victoria, please collect a CB card or tag at the registers at ANY Ritchies store, supermarket or liquor. All you do is nominate Heartkids Victoria - it’s that easy! This is an easy way for us to raise more funds for HeartKids with no costs involved. Go and shop at Ritchies whereby HeartKids Victoria will benefit! So far we have received over $7,800 in donations from the Ritchies CB Program.
Ritchies Store Locations: Victoria Ringwood North
Aspendale Gardens Bairnsdale Balnarring Beach Street Frankston Beechworth Berwick Camperdown Carrum Downs Cobden Cobram Churchill Cranbourne Dandenong Diamond Creek Dromana East Bentleigh Emerald Hastings Maffra Mount Eliza Mount Waverley Narre Warren Pakenham Paynesville
Rosebud Rowville Sale Seaford Somerville Timboon Towerhill Frankston Wantirna Wonthaggi Yarra Glen Yarrawonga
Ballina Bateau Bay Berowra Heights Boambee Broadmeadow Cessnock Coffs Harbour Cranebrook Crows Nest Elermore Vale Erina
Erina Heights Evans Head Griffith Harrington Waters Inverell Kurri Kurri Kyogle Nambucca Heads New Lambton North Ryde Port Macquarie Rutherford Singleton Singleton Plaza Spit Junction Taree Tarin Point Woy Woy
Boonah Carindale Daisy Hill Logan City Mt Gravatt
Heartfelt Thanks.... National Volunteer Week 13-19 May 2013
The theme for this year’s National Volunteer Week was ‘Thanks a
HeartKids would like to take this opportunity to thank the many volunte ers who give so much of their time to make a significant difference to our commu nity. Our volunteers do such a wonderful job in supporting the HeartK ids 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.
A great example is our dedicated Birthday Card Volunteer Julie, pictured left, who is still busy sending cards while on holiday with her family (right).
Big W Raffle supporting Murdoch Children’s Research Institute
For a number of years Big W have been supporting the MCRI Heart Research team, led by Dr Michael Cheung, though a variety of fundraising initiatives that they hold in-store. On Saturday 20th April some of our volunteers took part in the Big W raffle campaign to raise vital funds to help researchers at MCRI find better diagnostics, treatments and ways to care for the 3000 babies born each year with a congenital heart condition. They helped sell a record number of raffle tickets – an incredible 35,177 tickets were sold. The raffle not only raised much-need funds for heart research but provided an opportunity to raise awareness about childhood heart disease. Parent Nikki Burgess shared her son James’ story which featured throughout the campaign.
Volunteers selling raffle tickets at Big W, Doncaster
Here are some photos from the Geelong group selling raffle tickets at Big W on behalf on the Murdoch Children's Research Institute on Saturday 20th April.
Cara McKinnon and Tyson Rufus (above) even had their photos taken with Kerry and Craig from My Kitchen Rules. Thanks to Eileen and Cara McKinnon, Michelle and Jack Carney, Meagan and Tyson Rufus and Wayne and Ellie Gibson. The kids did a fantastic job speaking from the heart and selling lots of raffle tickets.
....for Your Efforts! Bardot Junior
Bardot Junior’s Chadstone store held a VIP Shoppers Day on 14 May, with 10% of sales donated to HeartKids. Heart child Thomas Gardiner’s parents shared their story on the invitations and Thomas charmed everyone on the day as he modelled his new Bardot Junior clothes. Shoppers were treated to mini manicures, temporary tattoos, delicious snacks and drinks. The event was great awareness for HeartKids with our banners placed both in-store and outside the store and our staff distributing HeartKids balloons to shoppers. A huge thank you to Bardot Junior Management and the Chadstone store staff for organising the event.
‘Crazy Day’ Fundraising
Oscar Mann’s school holds an ‘Appeals Day’ each year, a day that is about raising money for charities. Because Oscar has a heart condition, he and his school friends were inspired to choose HeartKids as one of the beneficiaries of their fundraising. This year the Student Representative Council members picked a ‘crazy’ theme, wearing odd shoes and colours, and held food, dance and game stalls for the younger students to raise money. Oscar is pictured below, second from the right, with his friends. He is Vice Captain this year in his final year of Primary School.
Chadstone Pamper Day Chadstone The Fashion Capital partnered with Monet’s Garden at the National Gallery of Victoria for a very special Mother’s Day Pamper Bar Event. Guests made a donation to HeartKids Victoria upon entry, raising $1800. We thank Chadstone The Fashion Capital and all the guests who enjoyed the pampering sessions for their generosity.
Thank you for your recent gifts... 2040 Club Abbeys Auctions Afitu, Crystal Alcoa - Global Impact Aneta, Mastek Anquetil , Renee Awad, Diana Bajada, Jodie Bardot Junior Beard, Stephanie Best, Mr Paul Beveridge, Angus and Melinda Biggin & Scott Bird, Peter Blackmore, Sarah Bloomfield, Stacey Blyth, Peter Borg Decorative Pty Ltd Brookes, Anthony & Bernie Brown, Anne Caillaux, Charles Caillaux, Gertrud Caillaux, Rolo & Naty Cameron, Michelle Camilleri, Rebecca Carreon, Roberto Carroll, Mr and Mrs Allan Castillo, Berta Maritza Cater-Maggs, Shae Centofanti, Rob Chick, Patricia Christopher, Hermansson Clark First National Coldstream Timber and Hardware Cole, Jenny Collett, Peter Compston, Julie-Anne Cook, AG & AJ Cook, C M Cook, Charisse Cook, Stuart Cooper, Barbara
Corrigan, Luisa and Hayden Cortes, Sylvia Coulston, Lynette Croft, Mr Wayne Crothers, Belinda Curtis, Giovanna Dahlsens Building Centers Pty Ltd Dal Santo, Sandra Davids Timber D’couto, Amy del Popolo, Salvatore & Sheridan Derham, Tahlie Direct Mail Solutions Dobrzynski, Robert Doecke, Brian Donations celebrating Rolando & Natalie Caillaux’s 50th Wedding Anniversary Dorid, Lorraine & Peter Drew, Tammy Droguett, Marcia Bulo Duffy, Terese Dummett, Brad Ellis-Ragg, Kathryn Estate of Margaret Anita Beruldsen Evocom Australia Farina, Brian Farnham Built Pty Ltd Featherston, Kevin & Beryl Ferm, Soreen Ferm, Tore Fisher, Gordan Fraser and family, Donald & Doris Freiberg, Alex Geason, Maree Geason, Margaret Gentle, Kersten Giblin, Lisa Graham, Lynn Grocock, Jodie
Gruber, Maria Guiney, Patrick Haberman, Janet Hartney, Ryan Herbel Constructions Heseltine, T Hill, Julian Hoffmann, Julie Hopkins , Val Illanes, Ramon Jackson, Danielle Jensen, Melanie John Heggart Transport Joynt, Wendy Karma Currency Foundation Kelgrove Holdings Kennedy, Molly Kenyon, Alice Kenyon, Graham Kidd, Colin Kiwanis Club Cobram Kong, Oi Chun Konstantos, Paul Laidler, Bronwyn & Richard Leon Cook Bricklaying Liz Louise, Charter Lutgens, Pierre Mahmut, Melkic Mann, Elizabeth (Annie) Mansfield Motorcycle Riders Group Margarita’s Services P/L McKimm, Christine Mecwacare Menzies Aviation Morgan, Jack Morgan, Justyn Mulcahy, Leanne MYM Timber and Hardware P/L Nelson, Matt Old Mentonians Assoc Oshry, Gary
Pascalis Peter Zaparas Paszkiewicz, Adam Paszkiewicz, Krystyna Paszkiewicz, Monika Patch Book Sales Patterson, Andrew Pearce, RJ & KB Peter , Edwards Poirrie, Lisa Porta Mouldings Precious Hearts Pryce, David & Sonya Price, Ebonie Quinane, Bianca Richardson, Lauren Rigoni, Robert Riqueliu, Nancy Ritchies Stores Robertson Wouters Robertson, Sue Rodgers, Pauline Ronva P/L Rowlands, Fiona Ryan and McNulty P/L Sargant, Toby Schultz, Nicky Sharpie’s Charity Challenge Foundation Skinner, Jenni Slama, Livio & Anna Maria Smith Family Smith, Amelia Spiers, Barney and Barb Stary, Kathryn Storr, Kate Strategem Financial Group Sturgess, Mark Sturgess, Paula Suazo, Ana Cecilia Sylvia, Kutypa Tang, Peter & Joyce Tasdom P/L Terrill, Mark The Phoebe Foundation Thomas, Fr. Donald
Thomas, Matthew Thompson, Grant and Deidre Thomson, Betty Thomson, Napier Tilling Timber Timber Merchant Association Ball Tirion Rodwell Tornquist, Leonardo Townsend, Carmen Travaille, Carolyn Tzovlas, Alexia Verde, Sal Viatek South East Victoria Pty. Ltd. Warragul Denture Clinic Warren, Glenda D Watkins, Marnie Watson, Lisa Watt, E S West, Mr and Mrs David Williams, Kerrie Williams, Tara Willis, Kirbie Young, Chris Young, Brian and Ana Maria
Young, Jeanette Z Transport Group Memorial Donations for: • Eli Jack Thomson • Emily Cook • Heidi Sienna-Lee • Hope West • Isaac Freddie Marriott • Kiara Shaye Ward • Olivia Nasserallah • Tina Lee Nelson • Angus John Albert Puszkar • Kaiden Whitelaw • Marjorie Jean McBurnie • Paul Desmond Murphy
Family Support Events
A number of HeartKid families were lucky to receive free tickets to the Razzamatazz show at Festival Hall recently. Our families joined other charities and groups to watch many skilled performers. We thank the Immune Deficiency Foundation and local businesses for sponsoring this show.
Branch Catch-Up This photo shows some of the fun when families met at a recent Tullamarine branch catch-up.
Yes! Iâ€™d like to be involved with HeartKids Victoria... HeartKids Victoria is a registered charity and our services rely heavily on the wider community to be volunteers, sponsors and donors. Tax deductible donations can be made securely on our website www.heartkidsvictas.org.au or forwarded directly to HeartKids Victoria. Please send me more information about HeartKids Victoria and in particular about:
p I would like to make a donation of $.........................
(thank you, an official receipt will be sent)
p Money Order - payable to HeartKids Victoria
Credit Card No:
Expiry Date: __ __ : __ __ Signature: ...........................................................
CVC No: __ __ __ Cardholder Name: ..........................................................
Date: ......................... Signed: ........................................................................
__ __ __ __ : __ __ __ __ : __ __ __ __ : __ __ __ __
p I would like to make ongoing donations to HeartKids
p Becoming a Member (Membership is free)
p Becoming a Volunteer
pP articipating in fundraising & awareness
p Business sponsorship
pM aking a regular gift through my bank
Street Address: .................................................................................................
p Leaving a gift in my will
Suburb/Town: ................................................ State: .......... P/Code: .............
Please complete this form & post to: HeartKids Victoria PO Box 803, Parkville 3052 Donations of $2 and over are tax deductible
Please automatically debit my credit card: Amount $.................................
p Monthly p Quarterly p Yearly I hereby authorise HeartKids to deduct these funds from the credit card detailed on this form until further notice.
Mr/Mrs/Ms: (First Name) .............................. (Last name)........................................................
Phone: ................................ Email: .................................................................. Heart Childâ€™s Name (if applicable): ........... ............. Relationship to child: .............. Please be assured your details remain strictly confidential. If you do not wish to receive any further information from HeartKids Vic, please tick this box p
Sponsors and Supporters National:
- Christmas in Saturday 20 July - Run Melbourne s Sunday 21 July st & Sept - Cu ppa for HeartKid Month of Augu d Hooves’ - ‘Hearts, Hats an st gu Au 15 ay sd Thur s st - Circus Quirku Saturday 17 Augu n Day io at uc Ed HKA Saturday 24 August - rpee Challenge finale ’s Bu Sat 7 Sept - Hoffy Bike Ride ids 24hr Charity tK ar He pt Sat 7 Se a Te gh Hi t ber - Devonpor o Sunday 8 Septem Aid, Crown Casin r Sat 14 Septembe - Fashion rm Family Camp ndlebark Fa 20-22 Sept - Ca ure Trains Day Sat 12 October - Box Hill Miniat Tween Camp October (tbc) Weekend 25-27 r HeartKids Saturday 26 October - Skydive fo rm Fa r - Myuna Sunday 27 Octobe Sunday 10 November - FunFlight Car Cruise sic ie Muscle & Clas Sun 24 Nov - Tass Xmas Party n’s re ild Ch ial ec Sunday 24 Nov - Sp Melbourne Christmas Party, Saturday 7 Dec go
eck inside or these events ch For more about .au rg victas.o to www.heartkids
MELBOURNE METRO BRANCHES Bayside Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids. org.au East Bentleigh Maggie Stavrou (03) 9563 7133 email@example.com Bundoora Amy Heafield 0421 518 366 firstname.lastname@example.org Dandenong Lucy (Fatima) Hussain 0430 738 820 Pakenham Joanne Arrowsmith (03) 5967 7083 email@example.com Tullamarine Lynette McCoullough (03) 9333 1586 lynette.mccoullough@ heartkids.org.au Wantirna Janita Felici 0422 976 024 firstname.lastname@example.org REGIONAL BRANCHES VICTORIA Albury/Wodonga April Schubert 0407 551 967 (02) 6056 6448 email@example.com Bairnsdale Caroline Foard 0438 928 821 firstname.lastname@example.org Ballarat Naomi Keath (03) 5332 0548 0408 559 535 email@example.com
HeartKids Vic Inc CONTACT US PO Box 803 Parkville Victoria 3052 P: (03) 9329 0446
ARN: A0021470B ABN: 16 336 986 918 VISIT US Suite 310 / 55 Flemington Road North Melbourne 3051
E: firstname.lastname@example.org Facebook: HeartKids Victoria (including Tasmania)
Contact Details Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 email@example.com
Wangaratta Lisa Dekeling 0421 655 636 & Shane Hack 0488 221 184 firstname.lastname@example.org
EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 email@example.com
OVER 18’s Erin Cervelli (03) 9513 9030 Cobram hearts4heart - Support for Adults with Bianca Quinane 0419 674 408 Heart Disease firstname.lastname@example.org Hall 0426 240 636 Tanya Echuca/Moama TASMANIA arts4heart.net.au info@he Tracey Hard 0438 962 056 Burnie t.au heart.ne hearts4 email@example.com Amanda Riley 0448 330 611 KAWASAKI DISEASE Geelong firstname.lastname@example.org Shirley Mates (03) 9894 1257 Libby Gibson (03) 5250 2439 Gail McFarlane (03) 6431 2127 email@example.com 0411 057 905 0488 033 789 Website: www.kdfoundation.org.au firstname.lastname@example.org email@example.com KABUKI SYNDROME Horsham Devonport Stacey McKiernan Gaynor Baker (03) 5384 2280 Claire Gluyas 0408 351 661 (03) 5275 1542 com igpond. mtbcarpentry@b firstname.lastname@example.org email@example.com Kyneton Website: www.sakks.org Hobart Lauren Roberts (03) 5427 2696 Paul Hyland (03) 6247 8435 HYPOPLASTIC LEFT HEART firstname.lastname@example.org 0418 561 504 SYNDROME Latrobe Valley email@example.com & SIMILAR CONDITIONS Sophie Werner 0427 955 453 www.hearts-of-hope.org Launceston firstname.lastname@example.org Leanne Amarant (Victoria) Kylie Smith (03) 6393 6240 Mildura (03) 5358 2945 0448 983 587 Fiona Dowie 0438 396 790 Leanneamarant@hotmail.com email@example.com firstname.lastname@example.org Csaba Ovari (Tasmania) (03) 6229 8169 INTERSTATE Portland email@example.com Contact details at: Kerry Sluggett (03) 5523 2503 www.heartkids.org.au 0418 312 320 LONG QT SYNDROME (LQTS) firstname.lastname@example.org Sherrie McDonald 0431 544 510 SPECIAL INTEREST GROUPS email@example.com Shepparton www.sads.org.au or BEREAVED FAMILIES EMAIL Cheryl Alexander www.sads.org.uk/ SUPPORT (03) 5825 4005 http://www.hearts-of-hope.org/ CARDIOMYOPATHY ASSN of AUST. firstname.lastname@example.org support/bereavment/intro.htm Website: www.cmaa.org.au/ South Gippsland HEART TRANSPLANTS Kerrie Disney (03) 5182 5531 MUSLIM FAMILIES Belinda Holden 0400 714 182 0409 950 608 Lucy (Fatima) Hussain email@example.com 0430 738 820 PACEMAKERS Mandy Tichelaar (03) 9728-6984 MULTIPLE BIRTHS Stawell Leanne Amarant April Schubert (02) 6056 6448 22q11 (03) 5358 2945 or 0419 864 412 0407 551 967 Audrey Cater (03) 9394 7965 firstname.lastname@example.org email@example.com 0420 500 905 firstname.lastname@example.org Wonthaggi Cath Methven 0429 325 643 email@example.com
Magazine for families and friends of HeartKids Victoria-Tasmania