2013 Autumn HeartKids Victoria-Tasmania Magazine

Quarterly Magazine for Victoria and TasmaniaAutumn 2013 Volume 23 Issue 1

support • awareness • research • advocacy

* February Awareness Month

* Research Grants-In-Aid

* Teen Camp 2013

Permission to reprint any of the personal stories in this magazine is

required from the author or the Chairperson. Any other articles may be

reprinted with an acknowledgement to HeartKids Victoria.

Please note that articles published in this magazine do not imply

endorsement and may not reflect overall views of HeartKids Victoria.

Also note that the opinions expressed in child stories represent

personal experiences and that medical details are specific to each

case. Although the conditions may appear similar to your child’s,

other details may differ. Parents requiring more specific information

should check with their child’s cardiologist.

Matters of the Heart - Chief Executive OfficerRecently we said goodbye to two of our staff, Amy Emmett, our Administrative Assistant, and Sarah Currie, our Office Manager. Many

of you would have spoken to Amy and Sarah when calling the office or arranging events

and fundraisers and experienced first-hand how happy, friendly and committed they were to

helping HeartKids be the best organisation we could in providing assistance to our special children and their

families.

Amy has decided to do further study and train in events management and Sarah has moved interstate with her partner who was transferred in his work. We will miss them greatly and wish them both all the very best in their new endeavours.

Since their departure we have had Sandra Zlatanovski join as our new Office Manager and Bea Tomlin in the role of Events and Fundraising Manager. I extend a very warm welcome to Sandra and Bea and I am sure you will all enjoy working with them as we in the HeartKids team already do.

In this edition of the magazine you will once again see that we feature a number of events and fundraisers that have occurred as well as many that are up-coming. I would encourage everybody to become involved in helping us conduct successful events and fundraisers. You can do this as an attendee/participant, a volunteer or if you have an idea for a fundraiser, contact Bea and let’s see if we can help you develop it into something you will be proud of.

I would like to acknowledge HeartKids Australia for again running a great Teen Camp. We have an article in this edition and it is clear how much it means to the teens who attend. We really believe in the value that these camps deliver to the children and I would like to remind you we will be conducting our Candlebark Family Camp and Tween camp later in the year. Keep an eye out for dates and get your name down when the enrolments open.

HeartKids Australia also announced the Research Grants-In-Aid Award recipients for 2013. HeartKids Victoria contributes towards these research grants on your behalf and it was fantastic to see three Victorian projects successful. As an extension to the Research Grants I would like to thank our volunteers who are helping A/Professor d’Udekem with his Fontan Registry Project. It is truly amazing how people are prepared to give up their own time to help out with this important work.

In closing, as always, I would like to thank everybody who maintains an involvement in HeartKids. We enjoy what we do very much, but our February Awareness Month activities reminded me that we cannot achieve much without the support of our members, donors, volunteers and sponsors. Please enjoy this Autumn edition of the HeartKids Vic/Tas Magazine.

Terry Hopkins CEOHeartKids Victoria

Our Team HeartKids Victoria Board 2012-2013 * Chairperson: Phil Riggio * Vice Chairperson: Natalie Palmer * Treasurer: Joseph Eid * Secretary: Melissa Karatjas * General Board Members: Toni Planinsek Chris Palmer Terry Hopkins Tania Tytherleigh Ashley Koenig Wayne Crofts

HeartKids Victoria Employees * Chief Executive Officer Terry Hopkins 0478 085 480 [email protected] * Support Manager Tracy Stanley 0478 091 773 [email protected] * Family Support Coordinators Sherrie McDonald 0431 544 510 [email protected] Amy Heafield 0421 518 366 [email protected] * Support Events Coordinator Lynette McCoullough [email protected] * Events & Fundraising Manager Bea Tomlin [email protected] * Office Manager Sandra Zlatanovski [email protected] * Membership/Magazine Coordinator Margaret Patullo [email protected] * Magazine [email protected]

Front cover: Fun on the Giant Swing at Teen Camp

Thanks to all who sent photos and information for this edition.

Contributions are always welcome - send to:

[email protected]

Thanks to Fuji Xerox and Documents On Call for printing our magazines.

Thanks to Gordon Patullo for post processing of some digital images.

HeartKids Victoria proudly supports children with heart disease and their families throughout Tasmania.For Tasmanian enquiries - please refer to the back page for our Tasmanian Branch Coordinators’ contact details.

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In This Issue 2 Matters of the Heart

3-4 Coming Events

4 Events and Fundraisers

5 Research Grants-In-Aid Awards 2013

6-7 Teen Camp

8-9 ‘To Logan From Mummy & Daddy’

10 Mother’s Day Special Offers

10 New Babies

11 Reaching Milestones

12 Hospital Happenings

13 RCH Cardiology Clinic

14-15 HeartKids Awareness Month

16 Tasmania News

17 Branch News

18 HeartKids Australia News

18 Carn the Kids Soccer

19 Reflections

20-22 Donations and Fundraising

22 Zaidee’s School Education Program

24 Diary Dates

Coming EventsGlow Run Date: Saturday 20th AprilTime: arrive 6pm for 7.30pm startVenue: Birrarung Marr, adjacent to Federation Square Join the HeartKids Victoria team and be a part of this year’s Glow Run event. Light up the night over a 5km glow course, dance a while in one of the Glow Zones, or just let the DJ’s spur you on to the finish line.So register now, plan your outfit at www.glowrun.com.au and then set up your everyday hero page: http://www.everydayhero.com.au/event/HeartKids_Victoria_Glow_Run_team

Rainbow Fun RunDate: Sunday 21st AprilTime: Registration 8.30am-9.15am; Run 9.30am sharpYou must pre-register the number of participants via email: [email protected]: Cardinia Reservoir Park, Emerald Walk, Run, Jog, Crawl - 5km and 10km optionsCost: $25 Adult, $10 per Child (under 12) $60 Family (2 Adults plus your kids)Proceeds of this event will be donated to HeartKids.“Walk in wearing white, Walk out looking like a Rainbow”

HeartKids’ Night of Nights See poster on this page Date/Time: Friday 17th May, 7.00pm for 7.30pm startVenue: Ultima ReceptionsCnr Keilor Park Drive & Ely Court, Keilor.Book via John Cendo: [email protected]

Razzamatazz (Variety Show)Date: Saturday 18th MayTime: 2pm; the show is about 60 minutes, with no interval. Venue: Festival Hall, 300 Dudley St, West MelbourneWith a mix of circus, magic, comedy and dazzling dancers, Razzamatazz is a variety show that is fun for the entire family. HeartKids will have free tickets to this show for our families who have a heart child or heart angel. Please register for tickets on: www.trybooking.com/cmxm For further details please contact Lynette on [email protected] or 0418 548 879, or see: http://razzamatazz.net.auSponsored by the Immune Deficiency Foundation of Australia (IDFA), a not-for-profit organisation that provides support for children, teenagers and adults who have Primary Immunodeficiencies and their families.

Heartfelt Golfing Fundraising EventDate/Time: Sunday 19th May, 11am-4pmVenue: Malvern Valley Golf Course Address: 1 Golfers Drive Malvern East Come and join us for a BBQ and Music at this event which HeartKids is proudly supporting. We will be auctioning a signed cricket bat and holding a raffle at 3pm. The bat has been signed by Mitchell Johnson, Shane Watson, George Bailey, Shaun Marsh, Xavier Doherty and James Faulkner.Art & crafts area for kids as well as clothing stalls.Tickets include BBQ and admission to the Event. Please book early, via http://www.trybooking.com/COJJCost: Adults $12.50, Children Under 13 $10.00 Family (2 Adults & 2 Children) $40.00Golf will be available, separately to tickets for the Event on (03) 8290-4020. Again please book early.

HEART KIDS’NIGHT OF NIGHTS

BOOK NOW! EMAIL JOHN CENDO [email protected] MONEy TO HEART KIDS!

FRIDAy 17TH MAy7:00 FOR 7:30 STARTAT THE uLTIMAFEATuRINGELVIS TRIBuTE ARTISTMARK ANDREWAND HIS SENSATIONAL SHOWGIRLS

• LiVE AUCTioNS • SiLENT AUCTioNS• 3-CoURSE MEAL • RAFFLES & MoRE

uLTIMA RECEPTION CENTRECNR KEILOR PARK DRIVE & ELy CoURT, KEiLoR.TICKETS $100 EACH. DRESS CODE: EVENiNg wEAR,DRESS TO IMPRESS.

Rotary Clubof Tullamarine

District 9800Victoria Australia

HOSTED ByGEORGE DONIKIAN

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Events and Fundraisers

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 to family members and friends, to gather

donations. Once your donations reach $1000.00 - your

jump is FREE! So jump for us, spread the word and

support HeartKids!

A New Fundraising Initiative with The Gift Tag Boutique

HeartKids Victoria and the team at The Gift Tag Boutique have combined to promote this new fundraising opportunity.

These gift tags are cut in different shapes such as trucks, ballerinas, daisies, hearts, toadstools and more. They are brightly coloured and sold in packs of two for just $2.00 or six tags for $5.00.

Get involved with this fun and funky fundraiser by buying them

for yourself or become the rep for your school or business and

make a really big contribution to HeartKids.

Look for an order form on our website, under ‘Get Involved,

Fundraising’. Please print and return it to The Gift Tag Boutique

and check out www.gifttags.com.au to find out more about

other fundraising options with The Gift Tag Boutique.

Entertainment Books 2013/2014We 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 hundreds of up-to-50%-off and 2-for-1 offers for the best restaurants, cafes, attractions, hotel accommodation, travel and much more!

The new Book is only $65, and you’ll receive over $15,000 worth of valuable offers, so you can choose what you want to do and when you want to do it up until 1 June 2014.

Entertainment™ Books feature valuable up-to-50%-off and 2-for-1 offers from many popular local businesses, including:

Red Spice Road, The Groove Train, Grill’d, Hoyts, TGI Fridays, KFC, McDonalds, Coles, Sea World, AFL, Caltex, Woolworths, Dan Murphy’s … plus hundreds more!

Order on-line https://www.entertainmentbook.com.au/orderbooks/180y947 or visit our HeartKids website to download an order form.

Heart Kids Victoria have teamed up with Aussie Farmers Direct!

Shop with them and they’ll support our fundraising effort.

Take up the introductory offer and help Heart Kids Vic reach their fundraising goals.

AussieFarmers.com.au/Fundraisingoffer

What’sNext?

AussieFarmers.com.au/Fundraising

Coming Events Continued...Informal Lunch for Parents & over 16’sDate/Time: Saturday 25th May, 11am-2pm

Venue: Doncaster Pancake Parlour550 Doncaster Rd, DoncasterGet-Together for Parents & Young Heart Adults aged 16 & over.

Meals at your own cost. Parents and their Young Adults are

encouraged to attend together but welcome to attend on their

own. Heart Angel parents are most welcome.

RSVP & for more details: [email protected]

Who will be Magnificent Miss 2013?Date/Time: Friday 31st May 8.00pm - 11.30pm

Venue: The Palms at Crown, MelbourneFor the first time ever Emmanuel Ammo Hairdressing, together

with L’Oreal Professionnel will be holding a fashion show

styled event and you’re invited. So get your friends together

for a night of fashion and fun, and inspiration at the inaugural

Magnificent Miss Show!

Get your floor seats before it’s too late! Tickets are available

at emmanuel ammo hairdressing, Shop 3B, 199 Toorak Road,

South Yarra or at: ticketek.comCost: $69 per person Also receive a $50 voucher from emmanuel ammo hairdressing

and many more gifts from all of our sponsors!

There are 45 magnificent entrants, come and vote for your

favorite one.Together we are supporting HeartKids. From the team at

Magnificent Miss & emmanuel ammo hairdressing!

HeartKids Christmas in July Date: Saturday 20th July, 6pm till late

Address: Soltan’ Pepper Restaurant Shop 11, 106-112 Gap Road, Sunbury Vic

Cost: $50.00 for adults (three course dinner) and $15 for

kids (2 course dinner with a drink)

With a DJ and Santa, it’s sure to be a fun night so bring the

kids along to this child friendly event and enjoy a three course

dinner and all the Christmas trimmings.

Tickets from: http://www.trybooking.com/CMNH

For alternate payment options call Emma on 0431 285 010, Amy

on 0411 552 264 or phone HeartKids Office (03) 9329 0446.

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The five research projects to be funded in 2013 are as follows:Principal Investigator: A/Prof Christian BrizardProject: Cord blood stem cell function in Hypoplastic Left Heart Syndrome BabiesInstitution: The Royal Children’s Hospital (RCH) Melbourne, Murdoch Children’s Research Institute (MCRI).Additional Investigators: Dr Salvatore Pepe, Dr Ngaire ElwoodProject Description:Babies born with HLHS need immediate life-saving heart surgery (Norwood procedure) and a series of later operations as they grow. We aim to boost the strength of their heart between operations by applying an additional treatment with their own cord blood stem cells (CBSCs). We have recently demonstrated the efficacy of a new treatment with CBSCs that can be performed during the Norwood operation. This study is to confirm (in greater detail for NHMRC* purposes) that these CBSCs from HLHS babies have the same ability and potential for initiating this boost for survival as those CBSCs from normal babies.

Principal Investigator: A/Prof Yves d’UdekemProject: Measuring the burden of untreated hypertension amongst patients with repaired aortic coarctationInstitution: The Royal Children’s Hospital (RCH) Melbourne, Murdoch Children’s Research Institute (MCRI).Additional Investigators: Ms Melissa Lee, A/Prof Michael Cheung, Dr Bryn Jones and Prof. Igor KonstantinovProject Description:Coarctation of the aorta is a narrowing of the main blood vessel requiring surgery soon after birth. Some patients later develop hypertension (high blood pressure) and die at a young age. We found in our initial pilot study of patients after coarctation repair with hypoplastic (smallish) arch that more than half of them develop hypertension, most of them unnoticed. We want to perform fine screening of the blood pressure of all those who have had this operation in order to determine the true incidence of hypertension after coarctation repair. We want to prevent a major public health issue.

Principal Investigator: Dr Robert JustoProject: Queensland Paediatric Cardiac Service long term follow-up programInstitution: Queensland Paediatric Cardiac Service, Mater Children’s Hospital, South Brisbane.Additional Investigators: Prof. Tom Karl, Dr Christian Stocker, Dr Honey HeusslerProject Description:Neurodevelopmental disability is common in children with congenital heart disease who are survivors of cardiac surgery. Recent evidence suggests that despite advances in care neurodevelopmental performance has not significantly

improved over time. This project will establish a formal process for assessing neurodevelopmental outcomes in a cohort of patients undergoing care at Queensland Paediatric Cardiac Service. In the initial instance two patient groups have been selected, 1 – patients undergoing ECMO, 2 – patients undergoing arterial switch or Norwood procedures. A formal neurodevelopmental clinic will be established with input from developmental paediatricians, physiotherapy, speech therapy, psychology and the dietetics department. These patients will be assessed at 4 months, 12 months,

2 years and 5 years post intervention. A Nurse Coordinator will be involved in these clinics to coordinate care and data collection of this patient cohort.

Principal Investigator: A/Prof Andreas SchiblerProject: Predictive role of thromboelastogram on risk for thrombosis and bleeding on ECLSInstitution: Queensland Paediatric Cardiac Service, Mater Children’s Hospital, South Brisbane.Additional Investigators: Sylvio Provenzano, Emma HaiszProject Description:Children with severe heart failure before and after open heart surgery often need support for their circulation using Extracorporeal Life Support (ECLS) bypass. In order to prevent clotting of the tubing these children are treated with a blood thinner. The accurate adjustment of this treatment is very difficult and tests currently available are not reliable. In order to gain new insight and improve the blood thinning treatment we aim to correlate current tests with each other and a new test (thromboelastogram, TEG). We aim to show that TEG adjustments prevent clotting of the tubing and reduce the need for blood transfusions.

Principal Investigator: Dr Flora WongProject: Understanding fetal circulation and physiology in congenital heart diseaseInstitution: The Ritchie Centre, Monash Institute of Medical Research, Monash UniversityAdditional Investigators: Dr Andrew Edwards, A/Prof Alex Veldman, Prof. Samuel Menahem, Prof. Dietmar SchranzProject Description:Many congenital heart diseases are due to obstruction of blood flow before birth, resulting in abnormal growth of the fetal heart, such as the hypoplastic left/right heart syndrome. The project aims to develop new therapies to relieve obstruction and restore blood flow before birth, as early treatment for hypoplastic left/right heart syndrome. In the fetal lamb model, we will access the fetal heart/great vessels by inserting a balloon catheter through the mother’s abdomen under ultrasound guidance. We will apply balloon dilatation of fetal heart/vessel valves to relieve obstructions, and to assess changes in the fetal blood flow and pressure.

HeartKids Research Grants-in-Aid Awards 2013HeartKids Australia is delighted to announce the research projects to be funded under their Grants-in-Aid program in 2013. 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, the Founding Partner of this program, and Kiwanis Australia, HeartKids Queensland, HeartKids Victoria and HeartKids Western Australia for their support.

Pictured at the Awards Presentation: Dr Anne Fletcher, HKA Vice Chair;

A/Prof Yves d’Udekem; Dr Robert Justo; Dr Andrew Edwards; A/Prof Christian

Brizard; Jann Kingston, HKA CEO

* NHMRC: National Health and Medical Research Council 5

Thanks to all of our new and returning campers and volunteers for making this year’s Teen Camp such a memorable experience. A big thank you as well, to all of the staff from Gundiwindi Lodge, for making all of our campers and volunteers feel so welcome at such short notice.

Due to the recent Victorian bushfires, Teen Camp almost did not go ahead. The original location selected for the camp, Rawson Village, in Rawson, was cancelled on the 17th of January, because of bushfires in the local area. HeartKids would like to thank all those other venues and associations, such as the Christian Youth Camps of Victoria, who assisted us in our last minute search for an alternative venue.

Campers arrived at Gundiwindi Lodge on Friday afternoon. This year we had campers from each state and territory. It was a very long journey for some, particularly those from Western Australia who had been travelling since 4am.

On Saturday the activities program commenced. The giant swing and the flying fox provided a challenge for those who had a fear of heights, while the low ropes course tested everyone’s balance. Other activities such as reptile education and yabbying proved to be an unexpected hit, with campers lining up to pet the turtles and lizards and many enjoying yabby races.

Saturday also saw the arrival of the camp ambassador, Dr Michael Toon, who inspired everyone with his speech about his experience as a heart kid. In addition to being a pharmacist, and then studying medicine, Michael, who is now a registrar, has won a bronze medal at the Athens 2004 Olympics for coxing the men’s heavyweight eight rowing team. That night, the much anticipated ‘op-shop ball’ was held in the recreation room, otherwise affectionately known as ‘the nightclub’. There were many wonderful and weird costumes and a great night was had by all.

Activities continued on Sunday. Campers and volunteers built some impressive huts; one offering was wheelchair accessible while another even had a welcome sign! Some were better than others at bush cooking; many a damper ended up in the ashes or was inedible! On Sunday there was fierce competition at the trivia night held in ‘the nightclub’. Following that, many campers enjoyed time around the campfire toasting marshmallows or preparing for their journey home the following day.

After breakfast on Monday morning, campers packed-up their belongings, were picked up or boarded buses to take them to the airport for flights home. Many were tired, but happy to have been reunited with old friends or to have forged new friendships. Teen Camp provided many campers with the knowledge that they aren’t alone; there are lots of heart kids just like them, so while they are at camp they are just ‘regular’ kids.

Teen Camp would not have been possible without all of the hard work and effort of our volunteers, thank you! HeartKids really appreciates the time that our volunteers give to attend Teen Camp. The introduction of the role of Camp Champions was a huge success; the Camp Champions acted as great mentors for the campers and have demonstrated their ability to become future Group Leaders.

HeartKids would like to acknowledge the generous support of our sponsors, who also make Teen Camp possible: LeasePlan for sponsoring the activities program for all of our campers; Actelion, for sponsoring the travel and accommodation for our volunteers; Device Technologies for supplying the defibrillator for camp; and Bonds for supplying t-shirts for use at camp.

2013 Teen Camp

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An Insider’s ViewTeen Leah Askey-Doran writes

about this year’s Camp:The weekend we all look forward to finally arrived! After a day of traveling, teen heart kids and supervisors from every state arrived at Gundiwindi Lodge. We reunited with one another and for those who had never met, it felt like they’d known each other a life time. Many of last year’s older campers joined us as camp champions, stepping up to the challenge of being leaders. After we were welcomed and told how the weekend would pan out, we were divided into seven groups. These were the groups we would be in while doing all our activities. A team building exercise that followed helped us to communicate and trust one another. Over the weekend we faced challenges together such as the giant swing, fishing for yabbies, flying fox, archery, hut building, damper making and low ropes. Each of the activities encouraged us to step outside our comfort zone and try new things.We were given plenty of free time to hang out around the camp site, and whether it was jumping on the trampolines, feeding the farm donkey and cows or having a match of ping pong, everyone enjoyed the company of each other and had a blast. The op shop ball saw some very creative outfits shine, as we danced and mingled with each other to music. The quiz night showed the competitive side of our campers as they cheered for their teams. During the camp we all took a moment to reflect on Paige Berry and Shaun Miller, two inspirational campers who passed away last year. We were lucky to have Dr. Michael Toon, the official camp ambassador for 2013 and an inspirational heart kid, speak to us about his journey with CHD. Michael, who studied pharmacy and medicine and is now a Registrar working in the field of cardiology, has also had a unique sporting career. Michael won a bronze medal at the 2004 Olympic games for coxing the men’s heavyweight eight rowing team. He taught us that all the challenges we face in life help shape who we are, and that anything is possible. Overall, camp was inspirational, funny, touching and an opportunity to have teens around us who understand what we go through. The friendships made on camp are some of the strongest we will make and we are all grateful to everyone who makes the camp possible and we are proud to be a part of HeartKids Australia Teen Camp.

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To our dearest Logan

We know that you are aware that Mummy and Daddy both love you very much. It has always been that way, right from the minute we found out about you. Things for us had already been difficult, as it took over 3½ years to fall pregnant with you. Despite having medical assistance previously, you ‘occurred’ all on your own, so you were already our little miracle and we were elated.

We were told at the 20 week ultrasound there were abnormalities in your heart that would need to be repaired once you were born. The doctors called them a Ventricular Septal Defect (VSD), aortic stenosis and coarctation of the aortic arch.

This news came as a shock, but didn’t make us want you any less - it made you even more special. As you grew, it became apparent that with your complications, the VSD was actually helpful, as it allowed good blood flow through your tiny heart as it developed, which avoided one side becoming smaller.

On the night you were born, 14 April 2012, Dr Sue Hiscock, our obstetrician, was there with a team of specialists, to see you safely into the world. They watched the heart monitor closely and when you became distressed near the end, she got you out. Mummy held you while Daddy cut the cord, but you were having trouble breathing and in a flash, you were whisked to the side so the doctors and nurses could help you. We each held you for a few precious moments before they took you away to care for you. When we saw you later in the neonatal unit, you had been intubated and your little face and body were covered in tape and tubes. We had barely even seen what you looked like.

You were given some medication to keep your ductus arteriosus patent, without which you would not survive. You were just 2½ days old when you underwent your first open heart surgery. Dr Yves d’Udekem and his team performed a Yasui procedure on your heart, which was barely the size of a walnut. It was the longest eight hours of our lives, waiting for the call to tell us we could see you. Amongst other things, Dr d’Udekem

had joined your pulmonary artery and aorta together and added a new pulmonary artery using gortex conduit. He was pleased with how the operation had gone. We rushed back to your side in ICU and although we couldn’t stay overnight, we barely left your side. At 2.8kg, you were dwarfed and hidden by all the equipment. We held your tiny hand and stroked your head, but were still unable to hold you. You would cry, silently because of the intubator. We knew the pain we were feeling was nothing compared to yours.

After what seemed like an eternity and some complications (including a collapsed lung & partially paralysed vocal cords) we were finally able to have our first real cuddle. Ten days we had waited anxiously for this moment. It was unforgettable.

You were moved out of ICU and we spent the following weeks watching you slowly get better. Mummy slept at the hospital with you and diligently made your milk, even though you were tube fed different fluids. Your Grandmas and Grandpa came from Canberra to meet you and were amazed at what a fighter you were. Bit by bit, dressings, tubes and monitors were removed, revealing a gorgeous little boy. You were almost a month old when we really saw your face for the first time.

Mummy met some of the other families at the morning teas HeartKids hold twice a week. Hearing stories similar to ours and sharing some laughs with Tracy, Sherrie and other parents helped provide some comfort and relief.

When you were five weeks old, we were finally able to take you home. You still had the nasogastric tube and needed daily ‘hospital at home’ visits. We play nurse every day, giving you medicines, and back then these included six weeks of twice daily injections. Mummy would cry with you, but it was all worth it to have you in our arms. We were a ‘somewhat’ normal family at last.

At 3 months old, we went on our first holiday. We drove to Canberra, where all the relatives live, and they were all looking forward to meeting you. However, the day after we arrived, you were a bit off colour, so off to Canberra Hospital for a checkup. You were admitted and diagnosed with bronchiolitis and

To Logan From Mummy & Daddy

At seven weeks old, Logan had already been through so much

First cuddles with Mummy & Daddy

Kiss for good luck, two days oldAfter a second open heart operation

to replace his conduit, 4 months old8

RSV. There was also bacteria in your blood, a possible indicator of a heart infection. Mummy & Daddy were worried, so you gave them your first smile, as if saying everything would be OK.

The doctors needed an echocardiogram, but it was not possible to have one, so after ten days in hospital, you and Mummy were flown back to Melbourne in the air ambulance. Two infections had developed, the more serious causing a significant blockage in

the conduit. A direct line (Broviac) was put to your heart, to administer antibiotics and another open heart surgery was scheduled for August.

Dr Yves d’Udekem looked after you a second time, replacing the conduit with a wider one. Your heart responded well, but you had a number of breathing complications and remained in ICU longer than expected. You had such a cheery disposition, even when sick. It was hard seeing you so unhappy after this operation. When we finally went home, you still had the Broviac and we had to be extra careful with you until it was removed weeks later.

By October, you seemed to be doing great, but a routine echo showed a new area of narrowing. Your cardiologist, Dr Bennett Sheridan recommended placing a stent, but wanted to wait till 3 months after your last surgery. In the meantime, you were given the ‘all clear’ to travel and you went on a fantastic holiday with Mummy and her best friends and their bubs. You visited the family in Canberra

on your way home to Melbourne. You became sick again, this time with a urinary tract infection and were again admitted to Canberra Hospital for about a week. The doctors and nurses remembered you and were happy to see you much improved from your earlier visit.

By the time the stent was placed in early December, we hadn’t been free of the hospital for more than a fortnight and you’d spent close to half your life there. You were the only one this didn’t seem to bother. You grinned and put up with everything. Surprisingly, (given your history) the stent placement was uneventful and you stayed only a few days in RCH. There had been a few other hiccups up to this point, but to be brief, we’ve skipped over them.

There are still a few unresolved issues, but we are hopeful that 2013 will be a much smoother ride. We cherish every moment with you and are eternally thankful to everyone at RCH for taking such wonderful care of us all. You will need more surgeries over the years and constant monitoring, but we will always be here beside you, holding your hand, sharing your smiles and tears and giving you our uncompromising love and support.

Much love and cuddlesMummy and Daddy xoxoJanuary 2013

Making the most of the playroom at Royal Canberra Hospital,

November 2012

Happy New Year, January 2013

Logan’s Grandma’s Muffin Day Fundraiser

Some of the guests at the event and (below) Logan drawing the lucky door prize

Above: Karen, Logan’s mum,

and Elaine baking up a storm and

(right) just some of the muffins!

HK Logan Howard's Grandma, Elaine Atkinson, recently held a successful Muffin Day fundraiser at her workplace. With the help of (baking) volunteers, she sold muffins, chocolates and HeartKids merchandise. Elaine raised over $2850 for HeartKids!

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We’re thrilled to introduce our own branded online shopping mall powered by GOthat.Packed with top local and international brands GOthat donates 50% of their commission on your every purchase to us!

Shopping and sharing GOthat with your buddies could make a world of difference to our cause.

Go to http://www.gothat.com/invite/heartkidsvic and start shopping!

Special Offers

New BabiesCongratulations and our very best wishes to all these

families who have welcomed new babies in recent months.

Robert & Jody Horvat announced the arrival of their son, Lucas William, on 16th October 2012. HK Lucas is a little

brother to Joshua.

Greg Du Chateau & Kara Chun and big sister HK Coco have announced the birth of Zjef on 1st November.

Daniel & Nicole Wilce announced the arrival of their daughter HK Shelby on 19th November, a sister to Bailey and Noah.

Peter Kemp and Jane Davies have welcomed their daughter HK Sarah, born 29th November. Sarah is a sister to Matthew,

Danielle and Makayla.

Grant & Nikki Crutchfield have a new son, HK Alex, born 19th December. Alex is a brother to Holly, Mark and Ava.

Leighton and Joanne Pratt and big brother Scott, have welcomed their son and brother HK Kylan, on 8th January.

Hayden & Louisa Corrigan have announced the arrival of their son, HK Max, on 14th January.

Sam & Lindsey Brittlebank have announced the arrival of their son HK River, on 21st January, a brother to Jackson and Holly.

Shannon Radford & Stacey Kennedy have welcomed their son Silas Leigh, born 31st January. He is a brother for HK Arlyn.

Duncan Campbell & Rebecca Reynolds have announced the arrival of their daughter Kyla on 7th March. She is a sister to

Hayley and Heart Angel Mia.

Ashlee London (an adult with CHD) and Jesse Boyle are thrilled to announce the arrival of Cassius, who was born on

the 19th March 2013.

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.

.

Happy Birthday!A very ‘Happy Birthday’ to all the heart

children and their family members

celebrating birthdays during Autumn!

Congratulations!

Mother’s Day Merchandise and Raffle

Spoil your mum this Mother’s Day and support

HeartKids at the same time....

Mother’s Day Pack:

$15.00 plus postage & packaging $10.00 (Victoria) or $13.50 all

other states, or ring and organise pickup from the HeartKids

office.

Pack includes: Two pashminas, travel mug, HK keyring and

more.

Mother’s Day Raffle:

With each Mother’s Day pack purchased you will also go into the

draw to win the raffle prize, to be drawn on Thursday 2nd May.

Please contact us on email: [email protected] or

phone (03) 9329 0446.

Donation Tin UpdateIn January we placed 99 tins in various places throughout Victoria and Tasmania; in February we placed 68. Our aim is to place 100 tins a month. If you can help us reach this goal, please contact [email protected] or phone the office on (03) 9329 0446.

10

Reaching Milestones

Arlyn has started at 4 year old

kindergarten this year.

Lily started in Prep this year.

Here’s Mitchell on his first day at Primary School.

Joey was very happy to be starting his first day of kinder.

Lincoln has started

school this year.

Kimmi was so excited to start school.

Millie is going to 4 year old kinder this year.

Braden started high school this year.

This is Danni (left) and Rylee who started

Prep and Grade One this year.

This is Jessica, 5 years old, on her first day of Prep.

11

Support at MonashHeartOur Family Support Coordinator Sherrie McDonald visits the clinic on Wednesdays 1.00 pm - 4.00pm

Monash Children’s Clinic, Special Medicine Centre (next to McCulloch House)246 Clayton Road, Clayton

Nurse of the Month AwardHeartKids 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.

Congratulations to Ashlea Austin, February Nurse of the

Month and to Charlotte George, who was March Nurse

of the Month.

IN HOSPITALA special hello and our very best wishes to all the heart children who have been in hospital in the last three months.

RCH Morning TeasAll 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!

World Social Work DayWorld Social Work Day was celebrated on 19th March and this year’s theme was “Promoting social and economic equalities”.

We would like to thank the Social Work teams at RCH and Monash for the work they do assisting our families.

HeartKids presented our RCH Social Work team with a smash cake to acknowledge their special day.

Hasbro DonationRCH Cardiology Clinic staff were thrilled to receive some toys kindly donated by Hasbro which will help to entertain children during their cardiac outpatient appointments.

Easter GiftsHeartKids distributed Easter goodie bags to children in Koala and Rosella wards. Special thanks to everyone who donated items to make the bags our best yet!

Australia DayThanks to The Cake Angels and Mamma Mia Cupcakes we spread some Australia Day spirit around the Koala ward.

In the words of a four year old patient, “AWESOME CUPCAKES”!!!!!

Hospital Happenings

12

RCH Cardiology ClinicHi everyone! My name is Mailei and I’m one of the Cardiology nurses often found at the Cardiology Clinic (near the meerkat enclosure).

Hopefully you have had the chance to check out our fantastic new hospital since the big move over a year ago.

In terms of the running of Clinic we have tried to keep things the same. Here is a bit of a run down on how it all works and falls in to place.

As many of you may be aware, we now have a central booking system so many of your appointments are now being generated through the booking office (phone 03 9345 6180).

With your review appointments you should be receiving only one letter with the time of your earliest appointment. Please remember to check the comments section for any additional information regarding your appointment, eg. bringing appropriate footwear if needing an exercise test, fasting if needing a specific exercise test or sedated echo. Please also remember that in some circumstances you may be required to be here for 2-3 hours including tests and it is indeed vital that you stay to see your cardiologist for your results.

Cardiology Clinic

The cardiology clinic is situated in the Specialist clinics off ‘Main Street’ on the Ground floor (between the hospital pharmacy and the giant iPad).

We are on the left side at the very end – A3 desk (otherwise known as the meerkats).

When you arrive for your appointment, please line up at the bollards and wait to be called up to the desk. As our reception staff are also making follow-up appointments and processing other patients, it can take a few minutes to call you up.

Bring your child’s Medicare card and health record book to show a recent height and weight if applicable or if you would simply like us to record measurements from your visit. We may also have requested a new referral, which will have been highlighted on your appointment letter.

Once checked in, we ask that you do not venture too far away and listen out to be called by one of our nurses. It

can get very busy and noisy in the room so it can be difficult to hear.

The nurse will firstly check height and weight (if applicable) and then record your child’s heart rate, oxygen saturations and blood pressure. In addition to this we also explain the tests we may be performing that day, as well as have a general chat to see how things are going at home (if following surgery or commencing new medication).

Tests....

Once you have seen the nurse we will then get you in for your tests as soon as one of our technicians is available. Tests that may be required include echo, ECG, pacemaker check, holter monitor or exercise test. We only have a certain number of rooms, as well as technicians, so at times again there can be a wait. We will however be able to give you a rough idea at the time. Please bring with you any comfort items, snacks, or iPad/DVD player if you feel this will make for a smoother appointment.

Please also bring with you any bottles of milk/formula as necessary. It is always a good idea to dress your baby in an outfit that will make it easy to access the chest area in case they are asleep prior to having their ultrasound (echo). Button up or press-stud clothes are always a winner!

We do have built in TV’s in all our echo/ECG rooms but no longer have any DVD players.

Consultation….

Once you have completed your required tests we will then get you to take a seat again until you are called in to see your cardiologist. If you want to go and get a drink or something to eat please check with your nurse, as there is the chance you will miss your appointment.

If your cardiologist is running late for any reason we will let you know and of course, under those circumstances, we may advise that you do have time to go for a drink/food.

It is vital that you do indeed wait to see your Cardiologist for your results as well as any other important information that could be relating to upcoming surgery.

Once you have had your consultation we ask that you again return to the staff at the desk to sign your Medicare slip and we can then book you in for your next appointment if necessary.

If you have any concerns/feedback, please do let us know as we are always looking to improve our service….

See you soon in Clinic!!

Tests performed at the Cardiolgy Clinic may include (left to right) blood pressure, echo and ECG.

The meerkats are a great attraction

Mailei at A3 desk

The Cardiology Clinic

13

Heartfelt thanks for ...

HeartKids Awareness MonthDuring February we ran a number of initiatives to raise awareness about HeartKids. Several families shared their stories in their local newspapers; HeartKids’ TV commercials aired nationally; the Retail Food Group ran commercials and in-store combos supporting HeartKids Awareness Month; our volunteers manned stalls at shopping centres and conducted a number of sausage sizzles.

Our Facebook page featured “The Faces of CHD” - if you would like to view the album, please click on Photos and select the album “Faces of CHD” when you visit: https://www.facebook.com/HeartKidsVIC We posted statistics and facts about Childhood Heart Disease all resulting in an amazing surge in hits to our page over the month peaking at 70,044!!!

Our Support team held a special morning tea for our in-patient families at The Royal Children’s Hospital on 14th February “International Congenital Heart Disease Awareness Day”. A HUGE thank you to the Cake Angels Network for their wonderful donation of baked goodies and a beautiful cake to raffle (pictured below). The treats were thoroughly enjoyed by families and staff.

A Patch Colouring-In competition was run during February - children downloaded the colouring sheet from our Facebook page and some schools who ran Awareness Month events also participated. Pictured are the winning entries in the age groups 0-2 years, 3-6 years 7-9 years and 10-13 years.

We would like to thank all the families who shared their heart children’s stories during HeartKids Awareness Month. Thank you for helping us inform more people about CHD.

We remembered our angels and celebrated our survivors during February. CHD doesn’t just affect our children and their families for one month of the year - it is ongoing. Please keep raising awareness any way that you can.

Thank You Angels“Thank You Angels” is the second single from

the new O’SHEA album ‘One + One’. Mark &

Jay O’Shea became ambassadors of HeartKids

Queensland in 2012. It is a very personal issue for

the pair as Mark is a Queensland heart kid, having

had his first surgery at the age of 6 months, and

again in 2010.

The video clip was released during Awareness

month and features some Queensland heart

children. Please view the video clip on You Tube

and purchase the song on iTunes.

O’Shea visited JB Hi-Fi Frankston for a live

performance and signing sessions on 16th February

and many of our families attended.

Bunnings BBQ at Waurn Ponds

On Saturday 16th February the Geelong group held a BBQ at Bunnings Waurn Ponds. It was a hot day, but with fantastic help from family, friends and HeartKids families, there was a great outcome. Our total profit was $2051.95 - an awesome effort.Thanks to our volunteers on the day, Alesha, Shane, Jade, Paul K, Paul F, Robyn, Tom, Audrey, Dave, Kristen, Kerri, Libby and of course Wayne, for slaving over the hot BBQ for the majority of the day. For their kind donations we also thank Fresh Generation, Hepburn Springs Drinks, Brumby’s Bakeries Geelong and Alcoa Point Henry.

Stalls were held at Eastland,

Greensborough Plaza, Box Hill

Centro and Chadstone (above)

14

...Awareness Month EffortsSt Dominic’s Primary SchoolSt Dominic’s Primary in Camberwell supported our February Awareness Month by holding a HeartKids Day and making their Friday school assembly, run by 1/2C, all about CHD and HeartKids.

The children re-enacted scenarios where a sick baby is bought to hospital by their parents and diagnosed with a heart condition by doctors and nurses, and

they gave the school some statistics about the prevalence of CHD in our community.

With the combination of merchandise sold, a gold coin donation for wearing a splash of red, collection tins, and other activities including a colouring competition, the school raised a grand total of over $1,300 for HeartKids.

Parkmore Poultry and Game

Parkmore Poultry and Game offered free taste tests and gave out free chocolate hearts for all gold coin donations

Parkmore Poultry and Game in Parkmore Shopping Centre, Keysborough, raised money for HeartKids on 14th February.

Katie Hammill and Lauren Johnson spent the day cooking samples at the front of the store for people to have a free taste test - they cooked hundreds of chicken ribs!

They asked people for a gold coin donation for HeartKids and everyone who donated was given a heart-shaped chocolate!

Katie and Lauren, who each have a heart child, had decorated the shop with lots of balloons and posters and they also handed out flyers for awareness.

At the end of the day they had raised $550.55 and are now looking forward to promoting HeartKids again next year!

Echuca AwarenessIt was heart child Chelsea’s and her family’s goal to raise awareness of childhood heart disease during February’s HeartKids Awareness MonthDonation boxes were placed at Echuca NAB, Two Tarts Juice Bar and Numanz Embroidery for the whole month of February.

A colouring competition for kids and a HeartKids smoothie were very popular at Two Tarts Juice Bar to help raise awareness.

There was also a stall at the Moama Market where donated soft toys were sold, a sausage sizzle was held at Bunnings and profits donated to Heartkids. It was a successful month with many more people now aware of the effects of childhood heart disease and the support HeartKids gives to the families affected. A special thank you to Lorelle and staff at Two Tarts Juice Bar and Catering, NAB Echuca, Numanz Embroidery, Bunnings Echuca, Rods Meats, Moama Bakery and Beverly Crawley (soft toys).

Photos (L to R): Chelsea at the sausage sizzle at Bunnings, at Moama Market,

with her brother Zachary at the Juice Bar and promoting the HeartKids smoothie 15

HeartKids Tasmania Car and Bike Show

Cambridge Park Sausage Sizzle

Tasmania News

Indiana’s GiftIndiana Edge spent several weeks in hospital when she had Kawasaki Disease.

Last year she thought of a way to help other children who would have to stay at

the Launceston General Hospital during

the Christmas holidays.

She asked friends and family if they wanted to help find toys and presents and craft packs for the children in hospital.

Her idea snowballed and as a result, Indiana and her helpers were able to deliver two trolley loads full of boxes!

The photos show Indiana sitting at a table laden with donations, and some special visitors, the Thylacine Squad and the Rainbow Fairy from The Fairy

Shop, who came to the hospital to visit

Indiana and the children in the ward.

Our Hobart group held a sausage sizzle at Cambridge Park in February to help promote HeartKids Awareness Month

On 24th February Aussiecoupes.net held their 3rd annual HeartKids Car and Bike Show

at Josef Chromy Wines at Relbia. Unfortunately the weather affected the size of the

event with widespread rain having an impact on attendance numbers.

I would like to thank all the Volunteers, including the VET students from St Patricks College, Scotch Oakburn and Grammar for their help and support on the day. Also thanks to my family and friends for their ongoing support of this wonderful event.

We also say a big thank you to the HeartKids Branch Network Coordinator, Sherrie McDonald for travelling over from Victoria for the event

Thanks to our official photographer Kylie Hamilton Photography, The Star Wars Storm Troopers, The Launceston Blues Club, Salters Hire, Bowdens Own Premium Car Care, and AutoBarn Launceston.

Aussiecoupes were able to donate around $700 to HeartKids as a result of the day.

We look forward to seeing you all at the next event in February 2014.

Kylie SmithCoordinator Launceston Branch Sincere thanks to Kylie Hamilton Photography for

permission to print some of her car photos.

Volunteer Kirby and Claire Gluyas,

both from Tasmania, with Sherrie

McDonald from Victoria

Netball TeamKylie Moore, mum to HK Lachlan, is in a netball team where everyone wears a HeartKids polo shirt as their team uniform.

Kylie is pictured here front right.

The Heartkids Netball Team were runners up in the Huon Valley PCYC Ladies Roster in 2012.

Now they have their fingers crossed for the premiership this year!

16

Branch NewsHeartKids has a number of Branches around Victoria and Tasmania. You are welcome to contact your local Branch Co-ordinator to

introduce yourself so the Co-ordinator can keep you informed about activities in your area.

Please see contact details on the back page of this newsletter and watch the branch news on our website: www.heartkidsvic.org.au

Select Members/ Events/ Branch Network-Coffee Mornings or follow us on Facebook for event dates.

We are pleased to introduce two new Branch Co-ordinators.

Lots of fun for kids at

a recent Coffee

Morning at Tullamarine

Fiona Dowie from Mildura ......

Tullamarine

Claire Gluyas from Devonport ......I am honoured to become a Branch Co-ordinator for the

Devonport region of North West Tasmania for HeartKids.

My name is Claire Gluyas and I first became a member of the wonderful HeartKids family in Adelaide in 2008 just after our son Edwin was born.

I am married to Mark and we have two children Annie (6 years) and Edwin (4 years).

Our family moved to Tasmania (my home State) in 2009 and we have enjoyed getting to know members of the HeartKids community here.

I have enjoyed a pre-family career in tourism/hospitality

both interstate and overseas, and have most recently

completed studying nursing!

I look forward to providing support and guidance to fellow

heart kid families, as well as working together as we strive

to increase awareness of Childhood Heart Disease in the

wider community.

You are welcome to keep in touch via email or my mobile:

[email protected] or 0408 351 661.

On 1st April the Geelong

HeartKids Group enjoyed a

family day for Easter which

included some craft, egg

and spoon races, bunny sack races and of course,

an Easter egg hunt!

Our thanks to Coles for their donation and also thanks to all those who attended, making the day an enjoyable one.

Geelong Easter Egg Hunt

Photo courtesy of Kristine Dean of K & R Photography

My name is Fiona Dowie and I have recently put my hand up for

the role of Branch Co-ordinator for Mildura and the surrounding

area. My aim is to organise a bi-monthly support group for local

heart kids and their parents, where we can all come together

and offer peer support and friendships within the group.

On a personal note, I am married to Ryan and together we have

four beautiful children; Kobe, Alaska, Tilly and Lincoln. Alaska

is our heart child and was born with Interrupted Aortic Arch &

Aortopulmonary Window. She had her open heart surgery at 6

days old and has since flourished in leaps and bounds.

I can be contacted on M: 0438 396 790 or E: ryan.dowie@

bigpond.com for details. I look forward to speaking and

meeting with you soon.

17

HeartKids Australia News

Polly and Waz from The Block and Erin Densham (left), heart kid and

Olympic triathlete, were at the Swisse Color Run to represent HeartKids.

Carn the Kids Soccer LeasePlan and the Melbourne Victory Football Club presented

HeartKids families with the opportunity to enjoy all the excitement

A-League has to offer at the Carn the Kids ‘Fun Day Out’ on

Saturday 16 February at AAMI Park, Melbourne.

Carn the Kids is a program that aims to give kids who may not

otherwise have the opportunity, a chance to enjoy a fun day out.

It’s been an eventful few months at HeartKids Australia.

Teen Camp 2013 was held from 18-21

January at Gundiwindi Lodge, Wandin.

A great time was had by all! We were

very grateful to have had Dr Michael Toon, a heart kid and Olympic champion,

attend as our Camp Ambassador. We

would like to thank our Camp Champions

and volunteers whose hard work made

this camp possible. We would also like to thank our Teen Camp sponsors

Actelion and LeasePlan, and, also Device

Technologies for providing our medical

equipment. To read an overview of the

Camp, please turn to page 6.

As you know, February was “Awareness

Month” for Childhood Heart Disease

(CHD) and there were a number of events

that coincided with this time.

On Valentine’s Day, the Hon Kevin Rudd

MP, Federal Member for Griffith and Mr

Steven Ciobo MP, the Federal Member

for Moncrieff, demonstrated bipartisan

support for HeartKids and raised awareness for CHD by wearing HeartKids

lapel pins.

Both MPs have been personally affected

by CHD. Kevin Rudd contracted rheumatic fever at age five and recently

underwent aortic valve replacement surgery for the second time. Steven Ciobo’s first child was born with a congenital heart defect requiring open

heart surgery. HeartKids Australia would like to thank both of them for their support and for helping to raise

awareness of CHD and HeartKids amongst fellow parliamentarians.

The day before, on the 13th of February,

the research projects awarded as part

of the Grants-In-Aid program were announced in Melbourne. Details of the five research projects that were funded this year are presented on page 5. HeartKids Australia would like

to thank Wilson HTM Foundation, the

Founding Partner of this program, and

Kiwanis Australia, HeartKids Queensland,

HeartKids Victoria and HeartKids Western

Australia for their support.

The inaugural Sydney Swisse Color Run,

known as the ‘happiest 5 kilometres on the planet’ took place on the 10th

of February. The fun run attracted 20,000 participants and raised funds for

HeartKids Australia and HeartKids NSW.

Participants ran through four different

stages of colour, and by the end of the

race everyone was covered in a myriad of

rainbow colours. We’re looking forward

to next year’s event.

With best wishes from everyone at HeartKids Australia,

Kind regards,

Jann

Jann Kingston CEO, HeartKids Australia

18

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 2006Eli Thomson 7th March 2012

Thomasina Brasier 8th March 2012Stacey Pye 18th March 1994

Portia Grimbos 22nd March 2010Bryce McCartney 25th March 2011Matilda Harrison 26th March 2009Ashlee Buckton 28th March 2010Noah Bannister 29th March 2004

Mary O’Keefe 1st April 2005Xavier Samu 3rd April 2002Emily Cook 9th April 1994

Daniel Kabrovski 9th April 2000Darcy Bartlett 5th May 1992Sarah Inkster 10th May 1992

Asha McNamara 16th May 2011Raphaela Perrin 19th May 2010Cameron Varro 30th May 2010

Anniversary DatesMatilda Harrison 1st March 2011

Paige Berry 19th March 2012Eli Thomson 30th March 2012

Emily Cook 1st April 1999Noah Bannister 7th April 2004Cameron Varro 10th April 2011

Jonathan McGrath 13th April 2008Stacey Pye 17th April 2007Max Barker 27th April 2008

Ethan Hanley 28th April 2010Portia Grimbos 30th April 2010Darcy Bartlett 30th April 2009

Jessica El Hassan 4th May 2012Bryce McCartney 19th May 2011

Amy Dawson 20th May 2010Ashlee Buckton 23rd May 2010

Bryce Ibbs 25th May 2004Mia Campbell 26th May 2010

Stephen Buckman 27th May 2010

Reflections

Thinking of YouOur thoughts and prayers are

with the families and friends of all

Heart Angels in their time of loss.

A Poem for OliviaBy: Her Mummy

Olivia is an Angel, Our daughter in the Sky

She’s a sister to our William, and a supporter of the Pies.

She is a precious Grandchild, a Niece and Cousin too.

She’s a big part of our lives, and many others, not a few.

She made us pray and think and change things that we do,

She gave us hope and joy, even the day before she flew.

It was so hard to watch her, but it never was a waste,

For she has taught us patience, kindness, tolerance and grace.

It broke our hearts to lose her, but it made her heart complete,

For part of us all went with her, the day she went to sleep.

See you later precious daughter, for this is not goodbye,

For we will meet you later, with our Maker in the sky.

Don’t forget we’ll always love you, and you’ll never be alone,

We’ll always be beside you, since the day God took you home.

So if you’re feeling sad or cross, like something is amiss,

Look up and find the brightest star – It’s Olivia – blowing you a kiss.

Heart AngelIn loving memory of

Olivia Nasserallah

2nd January - 3rd February 2013

Heart AngelAngus John Albert Puszkar

Born 25th January 2013, to stay

with us for only a short while

before the angels took you away.

We held you for only a short

time but you will live in our

hearts and memories forever.

With love forever, your Mum, Dad

and big brother Max.

Throughout our lives, there are rare occasions

when someone as gentle, lovely and transient as a butterfly,

will drop by, touch our lives, and stay just long enough

to leave something precious and beautiful that will

always remind us that they have been.

In Memory of Stan BrownPassed away 10th March 2013, aged 85 years.

In response to his grandson, Cameron Mates, acquiring a heart condition, Mr Brown made a very significant contribution to HeartKids Victoria

during the following fourteen years, both through his regular fundraising and by raising community awareness in the Latrobe Valley.

We have been very grateful for his contribution and our thoughts are with his family at this time.

19

Acknowledging....

Going, Going, Gone Goatee “I have now had my goatee for 7.5 years and I always said I would shave my goatee for a charity’.When Deon Mackay’s daughter Shelby-Anne was six months old, she was diagnosed with a Congenital Heart Disease called Scimitar Syndrome. Deon subsequently chose HeartKids to be the beneficiary of his fundraiser.

The fundraiser went really well and thanks to many supporters raised $3345 for HeartKids (including $300 from Shelby-Anne’s birthday).

Lyndhurst Primary School

Birdman RallyJesse Boyle participated in the Birdman Rally at Moomba on 10th March dressed as a super hero. Jesse used the opportunity to raise funds for HeartKids, a cause close to his heart as his fiance Ashlee London is a heart kid. He raised over $900!

Madeline’s First BirthdayMadeline Park recently celebrated her first birthday,

Madeline’s family collected some money in lieu of gifts, donating $150 to HeartKids.

The photos show Glenn Archer, and then Mickaila, addressing the school students, and also Mickaila presenting Glenn with the cheque.

The students of years 5 and 6 at Lyndhurst Primary

School took part in a real life learning exercise

based around planning, budgeting and running a

fun fair for the rest of the school.

The money raised from the fun fair was split between

the bike education program at the school and a

selected charity.

HeartKids was chosen as the preferred charity after

a presentation by Mickaila Sibberas to the rest of the

students about her brother, Daniel, who is a heart

child, and how HeartKids is a charity with a personal

impact for her. Her presentation was heartfelt,

knowledgeable and told the kids how lucky they are

and how much they could do for those who deal with

these medical issues on a daily basis.

The rest of the students voted and HeartKids was chosen as the recipient of $500.

Our Ambassador, Glenn Archer, attended the school on behalf of HeartKids and

was presented with a cheque by Mickaila in front of the school assembly.

In thanking all the students for their efforts Glenn told them about the challenges

that confront children suffering from heart disease and the work that HeartKids

do in supporting them through those challenges.

20

....Special Efforts!

Ballarat South Rotary Raffle 2013We would like to thank the Rotary Clubs of Ballarat South and of Highton for their support of HeartKids via their recent raffle.We are pleased to announce that with everyone’s combined effort we have raised $4338 for HeartKids. This includes the 20% that the Rotary Club of Highton has kindly donated back to us for the second year running.

Thanks to all who have bought tickets or who have been selling them. HeartKids send a big Thank You to Libby Gibson from our Geelong Branch, who has again coordinated the distribution of ticket books.

Clifton Springs Bowling Club

The Clifton Springs Bowling Club held a tournament and raffle in memory of Shaun Wilson-Miller on Sunday 10th March 2013. Thanks to two major sponsors, Geelong Travel and Geelong Constructions, the bowlers played for good prize money. The day was a great success raising $6000, with proceeds given to HeartKids Victoria and TLC for Kids. We would like to thank everyone involved at Clifton Springs Bowling Club especially Shaun’s grandfather, John Miller, who came up with the idea as a tribute to Shaun.

Above: John Miller addressing the players; the Miller family.

Right: HK Kiana Stanley drawing the raffle; team-mates HK Tyson Rufus & Alison Payne; the first prize winners.

Nilma Primary SchoolThe 73 students at Nilma Primary held a fundraiser and generously donated $100 to HeartKids.

The photo shows some of the students with Get Well cards they kindly made for the sick children at The Royal Children’s Hospital.

Hamlyn Banks PrimaryRecently Hamlyn Banks Primary School held a fundraiser in memory of Heart Angel Eliza Davis.

Her big sister Nikkitta attends the school and together with the Social Services Coordinator at the school, Mrs McLaren, they arranged for all the kids to purchase jellies and they also had some beautiful ‘heart’ face painting done.

Donations from these activities were given to HeartKids - they raised a fantastic total of $139.05.

Here is a photo of Nikkitta and her sister Sierra having fun on the day.

Biggin Scott at Yarraville FestivalOn 16th February, Biggin & Scott Real Estate in Yarraville held a Fairy Floss stall at the Yarraville Festival to raise money for HeartKids.The photo shows HK Oscar and his sister Ruby enjoying fairy floss for the first time.

21

Ararat and District Heartbeat

Atkinson, Elaine

Aussie Farmers Direct

Bainbridge, Mackenzie

Barlocci, Daniela

Bartuccia, Caterina & Anna

Basson, Marinelle

Bishop-Fox, Kirsty

Bourkies Bakehouse

Bowden, Wayne

Burgess, Matthew

CAF Australia

Campbell, Bree

Cantwell, A

Carn the Kids/LeasePlan Australia

Caruso, Josephine

Caruso, Tina

Cater, Shae

Centro Karingal

Centro Keilor

Clapp, Mr W

Clifton Springs Bowling Club

Coffee Supreme

Coles Burnside

Coles Port Melbourne

Compston, Julie-anne

Country Women’s Association

De Napoli, Julie

Derham, Tahlie

Donnelly Family

Donovan, Jason

Edwards, Peter & Elyse

Essendon Croquet Club

Featherston, Kevin & Beryl

Filipek, Sue

Gilmore, Craig

Gruber, Maria

Gupta, Ashish

Hamlyn Banks Primary School

Hasbro

HeartKids Australia Inc

Hotchkiss, Wendy

Johnston, Mr Phil

Kabrouska, Valentina

Kiwanis Club of Melbourne

La Luce Soy Candles

Lowden, Robert

Lyall, Kate

Lyndhurst Primary School

Mamma Mia Cupcakes

Marshall, Emma

Martino, Mr and Mrs R

Melbourne Heart

Memorial Donations for Arlo Donnelly

Memorial Donations for Tina Nelson

Miers, Chelsea

Mikkelsen, Brian

Monash New Born

Nelson, Matt

New China Restaurant

Parker, Lisa

Pierce Family

Point Cook Town

Pozo, Jacqueline

Precious Hearts

Quinane, Bianca

Rattray, Rhonda

Ritchies Stores

Rizzuti, Erica

Rodger, Tim

Serratore, Veronica

Seyis, Mitat

Sherlock, Lauren

Smith, Linda

Special Treats by Carolyn

Spencer, Ronnie

Spiers, Mr Barney

Sweet Charm Cakes

Tang, Peter & Joyce

Team Teddy

Terrill, Mark

The Australian Cake Angels Network

Thomas, Fr. Donald

Thompson, W J

Trybooking

White, Sue

Z Transport Group

Thank you for your recent gifts...

After many years of discussion and planning, Zaidee’s Rainbow

Foundation has launched Australia’s first ever online schools

educational program for organ and tissue donation.

The program was professionally written by ACHPER who

specialise in health education in schools at all levels.

This is an online educational program designed for teachers

to have both whole of class participation as well as individual

input. Both students and teachers look for real life stories that have relevant impact with powerful messages to inspire and motivate their education, and that is what Zaidee’s Story does.

It allows students to think about

both life and death in a way they have never before. And with

death, life can also be given via organ and tissue donation and

transplantation at end of life.

Allan Turner has presented Zaidee’s Story to young people at

hundreds of schools over the years, of all ages from primary to

secondary to universities. Students understand what organ and

tissue donation is all about, after it is explained to them by way

of what Zaidee went through and then donated at the end of her

short life.

Allan always explains that we need small children to donate

back to other small children. As adults, our organs and tissues

are too big for donation back to small bodies.

Educating our young students today allows for better

understanding of a subject that is not normally spoken about in

schools or at home.

Participation in this program will encourage students, teachers

and parents to “Inspire Discussion” as a result.

www.zaideeschool.org

Zaidee’s School Educational Program

This flyer can be read on the HeartKids

website: www.heartkidsvic.org.au

Zaidee’s Rainbow Foundation is

directed towards both children and

adults so they can think about those

who are waiting for a lifesaving

operation and a suitable match for an

organ or tissue. Think about giving this

gift to others so they can live a better

life and in some cases, just to live.

Zaidee Turner was the only child in

Victoria under the age of 16 years, and

one of the youngest Australians, to

donate her organs and tissues in 2004.

She was only 1 of 6 children nationally

to donate their organs.

Upon her death and gift of life to

others, Zaidee’s parents founded

Zaidee’s Rainbow Foundation to raise

awareness of the importance of organ

and tissue donation.

Organ & Tissue DOnaTiOn

Information

Familiesfor

What your family needs to know

• In Australia, the family’s consent to

organ and tissue donation proceeding

is always sought.

•The majority of Australians are

generally willing to become organ

(79%) and tissue (76%) donors.

•The most important thing that helps a

family’s decision is their knowing the

wishes of their loved ones.

•Most religions support organ

donation. To see what your religion

says visit the Donate Life website

http://www.donatelife.gov.au/home

and click on Religion.

Who to contact

[email protected] 03 5823 5321 or

0412 985 211

Want to find out more about Zaidee’s

Rainbow Foundation and the Education

Program? www.zaideeschool.org or

via the Zaidee’s Rainbow Foundation

website http://zaidee.org

Zaidee with her parents Kim and

Allan with big brother Jaz.

22

Yes! I’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.heartkidsvic.org.au or forwarded directly to HeartKids Victoria.

Please send me more information about HeartKids Victoria and in particular about:

p Becoming a Member (Membership is free)

p Becoming a Volunteer

pParticipating in fundraising & awareness

p Business sponsorship

p Making a regular gift through my bank

p Leaving a gift in my will

Please complete this form & post to: HeartKids Victoria PO Box 803, Parkville 3052

Donations of $2 and over are tax deductible

p I would like to make a donation of $......................... (thank you, an official receipt will be sent)

p Cheque p Money Order - payable to HeartKids Victoria

p Visa p Mastercard

Credit Card No: __ __ __ __ : __ __ __ __ : __ __ __ __ : __ __ __ __

Expiry Date: __ __ : __ __ Signature: ...........................................................

CVC No: __ __ __ Cardholder Name: ..........................................................

Date: ......................... Signed: ........................................................................

p I would like to make ongoing donations to HeartKids 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)........................................................

Street Address: .................................................................................................

Suburb/Town: ................................................ State: .......... P/Code: .............

Phone: ................................ Email: ..................................................................

Heart Child’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 SupportersNational:

State:

23

Diary Dates

Saturday 20 April - ‘Glow Run’ Fun Run

Sunday 21 April - Rainbow Fun Run, Emerald

Thursday 2 May - Mother’s Day Raffle Draw

Friday 17 May - HeartKids Night of Nights

Saturday 18 May - Razzamatazz Variety Show

Sunday 19 May - Heartfelt Golfing Event

Saturday 25 May - Parents/Young Adults Lunch

Friday 31 May - Magnificent Miss 2013

Saturday 20 July - Christmas in July

Sunday 21 July - Run Melbourne

Sat 14 September - Fashion Aid, Crown Casino

20-22 Sept - Candlebark Farm Family Camp

Sat 12 October - Box Hill Miniature Trains Day

Saturday 26 October - Skydive for HeartKids

Sunday 10 November - FunFlight Day

For more about these events check inside or

go to www.heartkidsvic.org.au

Contact DetailsBallarat Naomi Keath (03) 5332 3679

0408 559 535 [email protected]

Bendigo Natasha Prendergast

(03) 5441 8262 or 0421 590 169

[email protected]

Echuca/Moama Tracey Hard 0438 962 056 [email protected]

Geelong Libby Gibson (03) 5250 2439


Horsham Gaynor Baker (03) 5384 2280

[email protected]

Latrobe Valley Sophie Werner 0427 955 453

[email protected]

Mildura Fiona Dowie 0438 396 790 [email protected]

Portland Kerry Sluggett (03) 5523 2503


Shepparton Cheryl Alexander (03) 5825 4005 [email protected]

South Gippsland Kerrie Disney (03) 5182 5531


Stawell Leanne Amarant (03) 5358 2945 or 0419 864 412

[email protected]

Wangaratta Karyn Howard 0412 988 285

[email protected]

Wonthaggi Cath Methven 0429 325 643

[email protected]

TASMANIA

Burnie Amanda Riley 0448 330 611

[email protected]

Gail McFarlane (03) 6431 2127


Devonport Claire Gluyas 0408 351 661

[email protected]

Hobart Paul Hyland (03) 6247 8435


Launceston Kylie Smith (03) 6393 6240


INTERSTATEContact details at: www.heartkids.org.au

SPECIAL INTEREST GROUPS

BEREAVED FAMILIES EMAIL

SUPPORT http://www.hearts-of-hope.org/

support/bereavment/intro.htm

HEART TRANSPLANTS

Belinda Holden 0400 714 182

PACEMAKERS Mandy Tichelaar (03) 9728-6984

22q11 Audrey Cater (03) 9394 7965


EBSTEIN’S ANOMALY

Kathy Sims (03) 5831 1110

[email protected]

OVER 18’s Erin Cervelli (03) 9513 9030

hearts4heart - Support for Adults with

Heart Disease Tanya Hall 0426 240 636

[email protected]

hearts4heart.net.au

KAWASAKI DISEASE

Shirley Mates (03) 9894 1257

[email protected]

Website: www.kdfoundation.org.au

KABUKI SYNDROME

Stacey McKiernan

(03) 5275 1542 [email protected] Website: www.sakks.org

HYPOPLASTIC LEFT HEART

SYNDROME & SIMILAR CONDITIONS

www.hearts-of-hope.org

Leanne Amarant (Victoria)

(03) 5358 2945 [email protected]

Csaba Ovari (Tasmania)


LONG QT SYNDROME (LQTS)

Sherrie McDonald 0431 544 510

[email protected]

www.sads.org.au or

www.sads.org.uk/

CARDIOMYOPATHY ASSN of AUST.

Website: www.cmaa.org.au/

MUSLIM FAMILIES

Lucy (Fatima) Hussain

0430 738 820

MULTIPLE BIRTHS

April Schubert (02) 6056 6448


MELBOURNE METRO

BRANCHES

Bayside Sherrie McDonald


East Bentleigh Maggie Stavrou (03) 9563 7133 [email protected]

Bundoora Amy Heafield 0421 518 366

amy.heafield@heartkids.

org.au

Dandenong Lucy (Fatima) Hussain

0430 738 820

Pakenham Joanne Arrowsmith


Tullamarine Lynette McCoullough

(03) 9333 1586 lynette.mccoullough@

heartkids.org.au

Wantirna Janita Felici 0422 976 024

[email protected]

REGIONAL BRANCHES

VICTORIA

Albury/Wodonga April Schubert (02) 6056 6448 0407 551 967 april_peter@internode.

on.net

Bairnsdale Caroline Foard 0438 928 821 [email protected]

ARN: A0021470B ABN: 16 336 986 918

VISIT USSuite 310 / 55 Flemington Road North Melbourne 3051

HeartKids VictoriaCONTACT USPO Box 803 Parkville Victoria 3052

P: (03) 9329 0446

E: [email protected]

Facebook: HeartKids Victoria (including Tasmania)

www.heartkidsvic.org.au

2013 Autumn HeartKids Victoria-Tasmania Magazine

Documents

Transcript of 2013 Autumn HeartKids Victoria-Tasmania Magazine