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Quarterly Magazine for Victoria and Tasmania

Winter 2014

Volume 24 Issue 2

* Bardot Junior Fashion Show * Member Survey Results * Great Gatsby Gala

support

awareness

research

advocacy


Matters of the Heart -

Chief Executive Officer Well, the end of the financial year has passed and we have entered the 2014/2015 financial year with new challenges and objectives.

At HeartKids this includes looking at how we can improve and increase our support to the children and families who require our assistance. To that end we are working on a number of areas at present within our Family Support Programs which we hope will come to fruition over the next twelve months. These include, but are by no means limited to: •

Looking at how we can improve our support for Teens

Creating our own APP to make information more accessible

Additional support for our Tasmanian children and families

Looking at how to expand our regional Victoria support

Continuing to increase awareness of CHD in the community.

We are very pleased to advise that the Family Support Team is directly engaged with a major Grant-In-Aid Research Project “Family coping with Child heart disease”. This is being investigated by Professor Alun Jackson and his team at the Heart Research Centre, The Robinson Institute and Royal Melbourne Hospital and will aim to identify specific needs of families in this position that can be met by adapting existing programs. Other initiatives to look out for include: •

The development of a Corporate Membership Model for our valued supporters in this area

The launch of our new 'Off The Cuff' speakers luncheons

 eartKids as a charity partner of the new Melbourne Storm H Ladies supporter group “The Purple Hearts”

We will always endeavour to keep our website up to date and place new items on our Facebook page, so please stay connected. Warm regards Norm Norm Hutton CEO HeartKids Vic/Tas

children with heart HeartKids Vic Inc proudly supports Victoria and Tasmania. disease and their families throughout r to the back page for For Tasmanian enquiries - please refe tact details. con s’ ator rdin our Tasmanian Branch Coo

Show Front cover: Bardot Junior Fashion ith wsm Arro Photo courtesy of Joanne mation for this edition. infor and Thanks to all who sent photos to: heartkids@heartkids.org.au send ome welc ys alwa are ions Contribut s. ts On Call for printing our magazine Thanks to Fuji Xerox and Documen es. imag al digit e processing of som Thanks to Gordon Patullo for post

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Our Team HeartKids Vic Inc Board 2013-2014 * Chairperson: Phil Riggio * Vice Chairperson: Wayne Crofts * Treasurer: Joseph Eid * Secretary: Phil Riggio * General Board Members: Terry Hopkins Ashley Koenig Tania Tytherleigh Claire Gluyas Anthony Flapper

HeartKids Vic Inc Employees * Chief Executive Officer Norm Hutton 0409 874 452 norm.hutton@heartkids.org.au * Support Manager Tracy Stanley 0478 091 773 tracy.stanley@heartkids.org.au * Family Support Coordinators Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids.org.au Amy Heafield 0421 518 366 amy.heafield@heartkids.org.au * Member Activities Coordinator Lynette McCoullough lynette.mccoullough@heartkids.org.au * Membership/Magazine Coordinator Margaret Patullo margaret.patullo@heartkids.org.au * Office Manager Sandra Zlatanovski sandra.zlatanovski@heartkids.org.au * Operations and Administration Coordinator Paola Rossi paola.rossi@heartkids.org.au *Corporate Engagement Manager Lina Marrocco lina.marrocco@heartkids.org.au * Fundraiser & Events Coordinator Pruedonce Bainbridge fundraising.victas@heartkids.org.au * Magazine heartkids@heartkids.org.au

this magazine is of the personal stories in Permission to reprint any er articles may be oth Any . rson irpe Cha or the required from the author Inc. Vic ds rtKi Hea to nt ledgeme reprinted with an acknow do not imply ine gaz published in this ma Inc. Please note that articles views of HeartKids Vic rall ove ect refl not y endorsement and ma nt rese d stories rep nions expressed in chil cific to each Also note that the opi medical details are spe t tha and s nce erie r child’s, you personal exp to ilar sim ear ditions may app rmation case. Although the con uiring more specific info req s ent Par er. diff y other details ma gist. iolo card d’s chil ir the should check with


Coming Events HeartKids Education Day - Register NOW! Date: Join us on Saturday 2nd August 2014 Venue: The Ella Latham Auditorium, The Royal Children’s Hospital, Melbourne HeartKids Australia is holding a national childhood heart disease (CHD) Education Day to provide current and relevant information about CHD treatment and care for parents, caregivers and families affected by childhood heart disease. This day will include updates from renowned speakers in childhood heart disease treatment and will educate parents and caregivers about issues that affect children living with CHDs, including research updates, support services, transplantation, and transitioning to adult CHD care. The sessions will offer the opportunity for audience questions and provide an opportunity for families to interact with others in their position. Program Details will be available soon – please check our website and Facebook page for details. Please note attendees must be sixteen years of age or over, and there is a fee of $50 per person. You can register for the Education Day online at https://www. heartkids.org.au/education-day-registration-page/

In This Issue

3-4 Coming Events 5 HeartKids at Bardot Junior 6-7 HeartKids Great Gatsby Gala 8 Member Survey Results 9 Zarliya's Story 10 HeartKids Australia News 10 Cuppa For HeartKids 11 Member Activities & Achievements 12 New Babies 12 Support Matters 13 RCH Specialist Clinics Check-In 14-15 Hospital Happenings at RCH 16-17 Reflections 18 Branch News 19 Tasmania News 20-21 HeartKids Fundraising Supporters 22 Donation Acknowledgements 23 Sponsors and Supporters 24 Contact Details and Diary Dates

Ballarat Bush Dance A fair dinkum Bush Dance. Come one, come all, a fun night awaits you. When: Saturday 2nd August 2014 Where: Dean Hall, Ballarat/Daylesford Road, Dean VIC 3363 Time: 7:30pm for 8:00pm commencement Cost: Adults $15, Children $5, Children under 5 years - free Supper at conclusion, please bring a plate to share Tea/coffee and soft drink provided – please note as this is a child friendly fundraiser alcohol is prohibited. Please contact Alan Smith and Rohini Dobell M: 0400 984 975. Funds raised will be donated to HeartKids Victoria/Tasmania

Fontan Education Day Date: Sunday, 3rd August 2014; Time: 8:30am – 4:30pm Venue: The Royal Children’s Hospital, Melbourne This forum, the first 'Fontan Education Day', will provide a unique opportunity to hear from specialists in paediatric cardiology and congenital heart disease. This is set to be an informative meeting for patients, families and carers, doctors, researchers and allied health workers. It builds on the good works of the Fontan Registry – an Australian and New Zealand database. This initiative is the world’s largest database of Fontan patients, and it involves specialists and researchers working closely together to ensure patients and their families will benefit from the highest standard of evidence-based care and treatment. The Fontan Education Day will provide the opportunity for patients and their families to hear from experts in the field, and importantly, will also share patient insights and lived experience. For the relevant prices and to book your tickets please go to: http://www.trybooking.com/89311 Refreshments: Please note that the ticket price includes morning tea, lunch and afternoon tea. If you have particular dietary requirements, please contact us: info@fontanregistry.com New Zealand visitors can contact Julie Nielsen to enquire about potential financial support from @Heart: julie@heartnz.org.nz For additional information and queries, email: info@fontanregistry. com or phone: +61 431 659 911

Congratulations Athol Guy Congratulations to our ambassador Athol Guy. The Seekers have been appointed officers in the Order of Australia (AO) for their services to the performing arts.

'Off The Cuff' Inaugural Luncheon Date: Friday 8th August, commencing at 1.30pm Inaugural “Off the Cuff” Luncheon at The Kelvin Club, 14-30 Melbourne Place, Melbourne, proudly sponsored by Jet Couriers Join MC Glenn Ridge with special Guest Speaker Brian Waldron Brian Waldron has arguably ridden the greatest roller coaster of any Administrator in Australian sport. Brian was considered one of Australia’s leading sports administrators. Following beginnings at Richmond Football Club he progressed through to Chief Executive roles at St Kilda Football Club, the Melbourne Storm and the Melbourne Rebels. In a career spanning two decades he experienced success in the three biggest sporting codes in the country. In April 2010 Brian’s world changed following the revelations of the Melbourne Storm Salary Cap inquiry. After four years out of public life, Brian has decided to share his thoughts for the first time. Limited tickets are available for this first time event. T: 03 9329 0446, $95pp Please note: HeartKids insists Chatham House Rules apply for its “Off the Cuff” series.

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Coming Events Circus Quirkus

Circus Quirkus is a non-animal, family oriented 90 minute show. It includes Christof, Australia's best-loved clown, the amazing "Zim Boys" and a troupe of local and international performers who take the audience through traditional circus acts. See www.circusquirkus.com.au Note: each person attending needs a ticket, regardless of age.

Circus Quirkus Bendigo When: Thursday 21st August 2014 Where: Kangaroo Flat Leisure Centre YMCA, 9 Browning Street, Kangaroo Flat Time: 12:30pm (2:00pm finish) and 5:30pm (7:00pm finish) Please RSVP to Nadine M: 0413 710 342 or E: dalys@tpg.com. au by Monday 4 August 2014. Please provide names of all family members attending. This show is sponsored by the Immune Deficiency Foundation of Australia and local businesses.

Circus Quirkus Melbourne

Date: Sunday 24th August, Show times: 10am, 1pm, 4pm Location: Melbourne Convention and Exhibition Centre, 1 Convention Centre Place, South Wharf Free tickets to attend this event can be ordered by families who have a heart child or heart angel. Please book tickets for immediate family only, at www.trybooking.com/EYQY We will post you the tickets a week or so before the event. This show is sponsored by the Rotary Club of Preston and local businesses.

Magnificent Miss Date: 24th August The event includes Models, Hairstylists, Make Up Artists, as well as Photographers and Fashion Designers, working together and competing against each other to showcase their skills and create magnificent looks as they strive to be the next Magnificent Miss Champion. The final is held at The Palms at Crown. Proceeds from the event are donated to HeartKids Victoria/Tasmania. For further information about the event please visit: www.magnificentmiss.com.au

'Hearts, Hats & Hooves'

Date: Thursday 18th September, 2014 Venue: Maia, Atlantic in Docklands Launch yourself into the fun of spring racing at our Hearts, Hats & Hooves cocktail party. Get a first-hand look at the fashion and millinery forecast for the Spring racing carnival, enter our Fashions in the Field competition and meet racing personalities. Save the date for this event – details will be posted on our website and Facebook page.

Candlebark Farm Family Camp

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Date : 5pm Friday 19th - 2pm Sunday 21st September Venue: Candlebark Farm, Healesville; the camp is situated at 531 Healesville-KooWeeRup Road, Healesville. Families with a heart child or heart angel are invited to express an interest in attending a relaxed and fun weekend at this camp. You will be able to meet other HeartKids families and we will have organised activities throughout the weekend. Accommodation is camp style with bunk beds (6 bed rooms and 8 bed rooms available), all with their own shower and toilet. See website: http://www.candlebarkfarm.com.au

This camp is generously sponsored by the Kiwanis Clubs of Division 6, so there is no cost for accommodation and some meals. You will be required to provide your own dinner for Friday night and there may be an option for parents to eat out on Saturday night at your own expense. To show your interest in attending, please book on: www.trybooking.com/EYKB Please note: If we are not able to cater for every family who wants to attend, we will give priority to families who have not attended family camps before and then to families in order of registration. Please only register your immediate family so we can accommodate as many HeartKids families as possible. You will be advised by the end of August if we can offer your family a place. For further details, please contact Lynette McCoullough on lynette.mccoullough@heartkids.org.au or 0418 548 879

Box Hill Miniature Trains Day 2014

Date: Saturday 11th October, 2014 Times 11am - 2pm Venue: Corner Elgar & Belmore Roads, Box Hill North Thanks to the Kiwanis Club of Waverley, families who have a heart child or heart angel are invited to attend a fun day out at Box Hill MIniature Trains. A free sausage sizzle lunch and free train rides will be offered. Meet in the playground at 11am, enjoy a free sausage sizzle lunch at 11.30am and free train rides from 12.30pm to 2pm. Please only book for your immediate family so we can accommodate as many members as possible. Please book on: www.trybooking.com/EYNA For further details please contact Lynette McCoullough on lynette.mccoullough@heartkids.org.au or 0418 548 879.

FunFlight

Date: Sunday 9th November 2014, 10am – 2pm Venue: Victorian and Tasmanian aero clubs (Venues are yet to be confirmed, so please check our event calendar on our website and the booking site for aero clubs which we anticipate may be involved). FunFlight is a not-for-profit organisation which organises joyflights for children and teenagers touched by a life changing illness or other adversity. Families who have a heart child or heart angel are invited to express their interest in attending this free event. Places are limited and you must receive a formal offer to attend. Priority will be given to families who have not attended before. RSVP as soon as possible by booking on: www.trybooking.com/CMQL Contact Lynette McCoullough on lynette.mccoullough@ heartkids.org.au or 0418 548 879 for more information.

Melbourne Marathon Date: 12th October Please visit http://melbournemarathon.com.au/ for event details.

Hoffy’s Rainbow Fun Run Date: 26th October Venue: Cardinia Reservoir. All money raised will be donated to HeartKids Victoria/Tasmania. Save the date – more details to come.

Myuna Farm Day

To be held in 2015, date to be confirmed.


HeartKids strut their stuff at Bardot Junior On Thursday May 1, Bardot Junior opened their new store at Emporium in the heart of the City of Melbourne and who better to hit the fashion runway, as part of the celebrations, than the little heroes from HeartKids. Our gorgeous models Ryder Boyce, Maeve Coady, Julian Michielin, Alaska Dowie, William Arrowsmith and Caitlin Johnson were simply amazing! Once they got over some initial butterflies the children from HeartKids hit that floor with all the courage and attitude with which they have addressed everything in life. The girls at Bardot Junior loved dressing the six of them and, like everyone at Bardot, found the kids to be truly inspiring. Bardot Junior donated 10% of all the store’s sales on the day to HeartKids, and is committed to providing ongoing support for this very worthy cause in the future. Bardot Junior is renowned for its keen eye for emerging trends in fashion and its ability to interpret shifting trends to ensure that children remain at the front of the fashion field. Bardot Junior develops fashion for children in sizes 000 to 16, and has 14 stores around the country. Bardot Junior is also available online at www.bardotjunior.com.au Hamish Younger Marketing Manager, Bardot

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HeartKids Victoria/Tasmania...

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...Great Gatsby Gala The HeartKids Victoria/Tasmania Great Gatsby Gala was held on Friday 20 June 2014 at the RACV Club in the city. As they entered the foyer our guests compared outfits, posed for photos on the red carpet and were entertained by a pianist as they enjoyed pre dinner drinks. Walking into the venue was like being swept up and placed into another era filled with beautifully beaded flapper dresses, feathers and sharp suits. The ambience of the evening was fun and elegant. The striking black and gold décor with sparkling martini centrepieces draped with pearls and diamantes set the scene. The stunning décor was matched by a spectacular view of the city of Melbourne. The event was hosted by Sam Kekovich who was an entertaining MC, the Singing Waiters roved around the tables and the Dan Hammill Band had everyone dancing to the tunes of the 1920s. We were very fortunate to have two of our ambassadors attend in Robbie Kearns and Chris Johnson and an apology all the way from London from HeartKids ambassador Athol Guy. A special thanks to young adults Daniel Sibberas and Sally Webster who were interviewed by Sam Kekovich about their journeys with CHD. A memorable video featuring many of our inspirational heart children was shown, set to the very appropriate track Living in the Hall Of Fame by will.i.am - to all those who contributed thank you very much. The fundraising efforts of some special supporters were recognised and all were presented with a certificate of appreciation: • Joshua Sharp, who has raised over $70,000 for HeartKids through his Sharpies Charity Challenge Foundation • Julie Hoffman, who has raised over $100,000 for HeartKids through her Hoffy’s Burpee Challenge • Leon & Jackie Cook, who hold an annual golf day in honour of their daughter Makayla who died in 2012 and have raised over $50,000 for HeartKids. Guests competed for their chance to win one of the fabulous prizes on offer. They had the opportunity to win a dazzling white gold and diamond pendant valued at $3000 generously donated by Ian Sharp Jewellery, by purchasing a $50 glass of sparkling

Mumm Champagne. The balloon raffle featured black, silver or gold balloons at different price points of $50, $100 and $200 and each balloon had a special note from a heart child. There was a lot of laughter as everyone popped their balloons together, hoping they were one of the lucky 10 people to win a prize. There were plenty of amazing silent auction items in the Bold Bids auction run by Signed and Framed. People’s Choice employees Rachael and Karen drew the Member’s Card draw, dressed in PJs Run pyjamas to promote the PJs Run being held on 27 July. Board member Tania Tytherleigh gave a fantastic presentation including her personal experience with her daughter Flynne’s journey with her heart condition. It is important for HeartKids to have strong corporate members and Tania presented our inaugural Corporate Memberships to Biggin & Scott, Grimbos Building Surveyors, Bardot Junior and Canny. Our auctioneer extraordinaire Russell Cambridge from Biggin & Scott was again able to "strut his stuff" for our cause and, along with MC Sam Kekovich, not only entertained but ensured that our auction items reached expectations. Amongst the many who made the great Gatsby Gala come alive were our Principal Sponsor Grimbos Building Surveyors - to Anita and John a massive thank you. Likewise our appreciation goes to our Gold table sponsors, Bardot Junior - thanks to Hamish Younger and everyone at Bardot Junior for your continued support. Further acknowledgement for their generous support also goes to Canny for donating an exclusive, private dinner party for eight people at their award winning Lubelso Concept Home as an auction prize, Dejai Scott from 2ds creative for donating the graphic design, Epic Photography who captured the night, Signwave Campbellfield for the pull-up banners and media wall and adult CHDer Richard Lockett who made the trip from Canberra to attend. Thank you to our volunteers Christina, Sally and Chloe who ensured all the balloons and champagne glasses were sold. HeartKids is very thankful for all those involved with making this night such a success. We couldn’t have done this without the generous support of all involved. Thank you to everybody who attended, purchased lucky champagne glasses or balloons, bid on auction items and laughed and danced - you all made the night very special.


Member Survey Results Thank you to our members who completed the 2014 survey; we value and appreciate your feedback. The survey is part of our development of an effective feedback process for all HeartKids Victoria/Tasmania members and supporters. The information provided will help guide the planning and implementation of our new Support Programs. These results shed more light on exactly what services, projects, and overall goals members want from us as an organisation. • The majority of people see HeartKids' in-hospital support for families is its most important role. • Asked why they joined HeartKids, the majority of people responded, “Because I wanted to access ongoing support

from the network of fellow HeartKid families”. • 75% of respondents follow the HeartKids Victoria/Tasmania Facebook page to feel connected to the HeartKids community. We are always looking at ways to better support our families. If you have any suggestions please contact our Support Manager, Tracy Stanley: M: 0478 091 773 E: tracy.stanley@heartkids.org.au After anaylsing the findings of the survey we will focus activities to ensure alignment within our newly defined Support Program structure. Some key focus areas are shown below.

In Hospital Program

Outreach Program

• Improved communication about HeartKids and access to Family Support Coordinators in hospital • Develop bereavement support program • Antenatal support • Accommodation and Crises support • Parent consumables

• Expansion of Regional and Tasmanian support • Development of more readily accessible resources

For Life Program

Connects Program • Organise more family support activities across Victoria and Tasmania • Develop a sibling program • Provide more teen based activities

• Establish a transition program to effectively prepare young adults to best manage their condition in the adult health system. • Develop a website specifically for teens • Develop a range of information resources specifically for teens • Peer support programs • Provide information about current research

A new Team Member who is looking for Corporate Connections ... My name is Lina Marrocco and I have recently joined HeartKids in the newly created role of Corporate Engagement Manager. I am excited about this role, and the difference in the lives of children with heart disease, that I hope to make. I come to you with over twenty-five years of fundraising experience and a passion for making things happen. Having raised money for various charities – it’s now time to do the same for HeartKids! I can’t wait to start contributing to HeartKids and raising some dollars!

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I welcome the opportunity to speak with any of you who may have a Corporate connection that you believe may want to financially, or otherwise, support HeartKids. Please give me their contact details and I will do the rest! When I am not working at HeartKids, I can be found reading a good book, watching a movie or barracking hard for Collingwood! (I know not all of you will be happy about that aspect of me!) I do look forward to meeting as many of you as I can. Please contact me (lina.marrocco@heartkids.org.au 0403 202 324). Together we can make a difference!


Zarliya's Story My name is Zarliya and I have just turned two. I am a heart warrior, a princess and a beautiful soul, and I just happen to have Trisomy 21 (Down Syndrome). My Mumma says that from the moment I was made the sun shone brighter, the stars twinkled longer and her heart beat stronger. I have two older sisters, Kiarra who is eighteen, Jamayka who is almost fifteen, and my big brother Jaspa who has just turned four. My journey began when I was born five weeks early because my Mumma’s placenta stopped working, but she says it was because she couldn’t wait any longer to meet me. I was taken straight away to The Royal Children’s Hospital because I was born with a broken heart. I was born with an AVSD (Atrioventricular Septal Defect) and TOF (Tetralogy of Fallot). Basically I had several really big holes and a few other complicated things as well. I was born strong - I was in hospital for only six days even though I had arrived early. Adjusting to life at home was easy until I was six weeks old, when the cold I had caught developed into RSV (Respiratory Syncytial Virus) and Pneumonia. Mumma and I were in hospital for six weeks. Everyone missed us and it was really hard on everyone but we all made it through. After this I was in and out of hospital with viral infections for several months. When I was four months old, I started having complications when I cried. It must have been scary for my family to watch me go blue every time I cried. So my doctors decided to admit me to hospital again for my heart surgery, but due to my size and other complications in my heart, they couldn’t repair my heart at this point in time. They decided to insert a shunt to redirect blood flow until I became bigger and stronger. It was then that I got my first zipper. Life over the next nine months was difficult, trying to keep me healthy and happy until my big surgery. The 19th April 2013 was my heart day. Mumma and Daddy said this was the longest day of their lives. I was in surgery for nine hours and my big sister Jamayka stayed with Mumma at the hospital to help distract her. In true princess style, I was out of ICU in less than twenty four hours and discharged from hospital in six days. Now I have a new zipper. Since my surgery, I have learnt to sit, crawl, stand and about four weeks ago I started to walk. Recently I have even learnt to climb stairs. Being two is so much fun. I love to dance and sing, but the best thing is Mumma’s cuddles, Daddy’s kisses and chasing my big brother. I absolutely adore Peppa Pig and Doc McStuffins, and dancing to The Wiggles, but really I will get down and boogie to anything. My big sisters take me to the playground sometimes and I give them many smiles in return. Being born with Down Syndrome has not held me back. I have to practise some things a lot and it takes me a little longer to learn, but I always get there in the end. Mumma says I can be whatever I want to be….to reach for the stars and to dream big, and with the love and support that I get from my family, I know I can do anything.

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HeartKids is a Partner in an Exciting Research Project Australian researchers who have formed community partnerships to improve health outcomes across Australia have received $11.4 million in Federal Government funding. Associate Professor Yves d’Udekem d’Acoz ($1.25 million in NHMRC funding) will work with HeartKids Australia and the National Heart Foundation to improve the survival and quality of life of babies born with severe congenital heart conditions. The Grant is one of the highlights of grants for health and medical research awarded by The Hon Peter Dutton MP, Federal Minister for Health and Minister for Sport. Minister for Health Peter Dutton said the grants further demonstrated the Government’s commitment to frontline services, including health and medical research in Australia. “Jointly funded by the National Health and Medical Research Council (NHMRC) and various partners, the funding supports 14 new Partnerships for Better Health,” Mr Dutton said. “The grants encourage alliances between partners who deliver or make decisions about health care services, and researchers who can offer tailored, evidence-based solutions. “This latest announcement includes funding for research that aims to improve outcomes for children with cerebral palsy, assess the impact of exposure to toxic chemicals in early life and enhance the quality of services for young people with mental illness. “The partners include hospitals, state governments and patient representative bodies.” Mr Dutton said he was pleased to see research being conducted that is relevant and responsive to the needs of governments and organisations. “It is encouraging that Australia’s best health and medical researchers are responding directly to the needs of those people and organisations at the front line of improving health services,” he said. NHMRC CEO Professor Warwick Anderson praised the high quality of applications received and the spectrum of important health issues the research addresses. “These are highly targeted research projects which hold the potential to deliver better health outcomes for the community,” Professor Anderson said.

HeartKids Australia News I was pleased to participate in the HeartKids Planning day which was held in Sydney in late March. Representatives of HeartKids Australia and the five state HeartKids came together to develop strategic objectives for the organisation. It was a good opportunity to meet and share information with colleagues, all of whom are committed to improving the lives and futures of those affected by childhood heart disease. Research is a core pillar of HeartKids Australia - to date, we have provided more than $2 million to fund projects into the causes, treatment and management of childhood heart disease. HeartKids Australia is now very pleased to be a partner in a major research project aimed at improving the survival and quality of life of young people and adults with the most severe congenital heart disease. The project, which will be led by A/Prof Yves d’Udekem, Paediatric Cardiac Surgeon at The Royal Children’s Hospital Melbourne, is titled “The Australian and New Zealand Fontan Registry: An ideal model of care to improve the adult life of a child born with congenital heart disease”. It will involve all adult congenital heart disease units in Australia and New Zealand, HeartKids Australia and the National Heart Foundation. Registrations for HeartKids Education Day 2014 have opened. The event which is being held in Melbourne on Saturday August 2, will bring together leading medical and nursing specialists and allied health professionals to share the latest and most relevant information for families affected by childhood heart disease. The program will be available on our website in the near future. A Fontan Education Day is to be held at the same venue on the following day. Planning is also underway for the 2014 Cuppa for HeartKids Campaign which is to be held in August and September. Start thinking about how you will make your cuppa count! Our team has also been busy relocating offices. After spending a number of years based in Pennant Hills, we are now located in Crows Nest. Kind regards, Jann Jann Kingston CEO HeartKids Australia

Cuppa for HeartKids 2014 Hosting a Cuppa is a fun and easy way to raise money and get together with your families and friends to make a real difference for those affected by Childhood Heart Disease. We would like to invite you to hold your own Cuppa throughout August and September to help fund essential support for children with heart disease and their families. This can be done in many ways like your work place, sports group, school, mothers group, play group or a girls or guys night in. Our website www.cuppaforheartkids.org.au is full of resources to ensure your Cuppa is a success, including posters, invitations, recipes and helpful information on fundraising.

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Member Activities & Achievements Razzamatazz

The recent Razzamatazz variety show involving dancers, magic and comedy was enjoyed by some of our families during a 60 minute show. We thank the Immune Deficiency Foundation of Australia for offering our members free tickets to this show.

Catch Up for Over 17's

Some families with young adults who have grown up as 'heart kids' recently met for lunch. This photo shows the nine ACHD (Adults with ChildhoodAcquired Heart Disease) who, along with some parents and siblings, were part of the group of twenty-five. This annual catch-up is held in May, remembering the families and young adults who have been involved as volunteers since HeartKids Victoria began in May 1990.

Child Achievements Zane Zane, 6, currently attends his second year at Vermont South Special School. He had a VSD repair at five months of age. Regardless of all the challenges he still faces due to his VCF Syndrome/autism, Zane was so determined to write his name for the first time! What an achievement and such a magical moment! His family is so proud of him.

Shannon Here's Shannon ready for his first day of school at Thomastown Meadows Primary School. He said, 'I am 5 years old. Mum and Dad were told that I would not survive to my first birthday. But here I am and I'm now doing great. I have Cardiomyopathy and all is stable.' Thankful for support from HeartKids & the RCH, and enjoying this new chapter of his life at school with all his friends & teachers, Shannon's message is 'Never give up hope.'

HeartKids Victoria 1990-2014 24 years of Support - Awareness - Research - Advocacy ‘Remembering our Heart Angels and Celebrating our Heart Survivors’

National Volunteer Week

Celebrate the Power of Volunteering HeartKids Victoria/Tasmania joined thousands of organisations around the nation marking the 25th anniversary of National Volunteer Week in Australia (12 – 18 May). This year’s campaign theme “Celebrate the Power of Volunteering” was all about appreciating and understanding the work of volunteers across the nation. HeartKids would like to take this opportunity to thank the many volunteers who give so much of their time to make a significant difference to our community. Our volunteers do such a wonderful job in supporting the HeartKids team and more importantly our families. We are only able to provide the activities and services we do with the help of our dedicated team of volunteers. Norm Hutton, CEO HeartKids Victoria/Tasmania, said: “National

Volunteer Week 2014, enables us to dedicate and honour our volunteers who donate their time so selflessly. On the 25th National Volunteer Week, we join with other organisations to celebrate our exceptionally skilled volunteers who are not only an asset to our organisation, but also enhance the way we provide services and support our community. This is their day.” If you would like to volunteer for HeartKids Victoria/Tasmania – please complete our volunteer registration form available on our website. http://heartkidsvictas.org.au/how-you-can-help/volunteering/


Support Matters

Congratulations!  

.

New Babies

Congratulations and our very best wishes to all these

 families who have welcomed new babies in recent months.  Jane Jackson and Darren Jones welcome a new son Kade    

 

Nicholas Jones who arrived safely on the 21st November  2013. A brother for Scott and heart angel Thomas.

Jay & Yvonne Vuillerman have welcomed the arrival of their son, HK Tai, on 23rd January 2014. He is a baby brother to Maia.

 

Joshua Groves & Hannah Jarvis have a baby daughter,

to Bentley.

Christopher & Simone Munro proudly announced the birth of their precious new son, HK Harry, on 31st January.

Shannon Radford and Stacey Kennedy are pleased to

a younger sister for HK Arlyn and Silas.

 HK Alexis, who was born on 24th January. She is a sister 

 announce the arrival of Elodie on 23rd February. Elodie is 

Tewai & Blaize welcome their beautiful daughter to the  world, HK Niar-Ivy Manawanui, born 23rd May.  "He taonga koe taku wahine purotu ka nui taku aroha mou" 

 Cody Edwards and Courtnay Burfoot proudly announced 

the birth of their precious son, HK Xavier, on 28th May.

Leo and Josephine Iazzolino are pleased to announce

for HK Ava.

 the arrival of Dion on 31st May. Dion is a younger brother   

Darren Fowler and Narelle Sinclair are proud to announce  the safe arrival of Natalie Margaret on the 13th June.  Younger sister to Mikey and HK Jackson.

In each edition of the magazine we like to welcome any new babies who were born in the last three months.

   

If you have a new addition to your family (heart child or sibling) and would like the baby’s birth announced in the magazine, please send us the details.

Happy Birthday!

A very ‘Happy Birthda y’ to all the heart children and their fam ily members celebrating birthdays during Winter!

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     

Welcome to the Winter Edition of our magazine, it’s hard to believe that we’re already more than halfway through 2014. We hope to see many of you at two information sessions in August: The HeartKids Education Day is on Saturday 2 August at The Royal Children’s Hospital. Education Day will provide current and relevant information about CHD treatment and care for parents, caregivers and families affected by childhood heart disease. This day will include updates from renowned speakers in childhood heart disease treatment and will educate parents and caregivers about issues that affect children living with CHD, including research updates, support services, transplantation, and transitioning to adult CHD care. The sessions will offer the opportunity for audience questions and provide an opportunity for families to interact with others in their position. The first Fontan Education Day will be held on Sunday 3 August at The Royal Children’s Hospital. This forum will provide a unique opportunity to hear from specialists in paediatric cardiology and congenital heart disease. This is set to be an informative meeting for patients, families and carers, doctors, researchers and allied health workers. The Fontan Education Day will provide the opportunity for patients and their families to hear from experts in the field, and importantly, will also share patient insights and lived experience. Please check the Coming Events section of the magazine and our website www.heartkidsvictas.org.au for full details. The HeartKids Family Support Coordinators Development program proudly supported by Charter Hall is on Thursday 31 July and Friday 1 August. The two day program will be held at The Royal Children’s Hospital, Melbourne. As well as professional development, it provides an opportunity for the Family Support teams from around Australia to come together to share information about services and programs. We look forward to catching up with our interstate colleagues and will provide a report about the outcomes in our Spring magazine. Our support team is busy planning activities for the remainder of the year. For the latest information on upcoming activities and events please check the Events Calendar on our website www.heartkidsvictas.org.au A reminder that Privacy Laws prevent us from viewing the patient lists in hospitals. If you would like one of our team to visit you, please advise the ward clerk and/or nurse or send us a message either via email or text message. You can also write “HeartKids visit requested” on the whiteboard in your child’s room. Have a safe and healthy winter! The Family Support Team


RCH News Specialist Clinics Check-In Checking in for Specialist Clinics Appointments The Royal Children's Hospital is making changes to reduce the queues and congestion in the waiting areas of Specialist Clinics. The new system will make the check-in process easier for you. In June 2014 RCH introduced two ways to check-in when you arrive for your appointment. You can use the kiosks or RCH mobile phone app. Much like an airport you will not have to go to the desks and queue up to notify a staff member that you have arrived. The new check-in system will also notify you when the clinician is ready to see you. If the clinic is delayed the system can notify you on your mobile when it is time to return to the Clinic waiting area. This will give you more freedom to enjoy other areas of the hospital while you wait. You will not need to stay in the Specialist Clinic waiting area, worried that you will miss your appointment.

Check-in kiosk The kiosks are located near the entrance to Specialist clinics A, D and E. Bring your appointment letter and scan the barcode. If you forget your appointment letter, swipe your Medicare card. Follow the instructions on the kiosk or ask one of the volunteers for help. Don't forget to take your ticket.

Mobile phone app There is a mobile phone app coming which can be downloaded from the iPhone or Google Play store. You can download the RCH check-in App before you come to the hospital. You will need to use your appointment letter to register. Download the App Soon! The Check-in app allows you to: • Check-in on your mobile phone when you arrive at the hospital • Receive your clinic ticket number on your phone • Receive notifications about clinic delays and when the clinican is ready to see you • View a diary of your upcoming appointments • Link to other information about RCH

Pathology / Radiology before your appointment If you need to have pathology or radiology tests before your clinic appointment, please have these prior to checkin at the kiosk or on your mobile phone app.

When the clinician is ready to see you • Your ticket number will be displayed on the TV screen in the waiting area • If you have entered your mobile phone number on the kiosk check-in you will receive the same information on your phone • Make your way to the room number indicated • Your clinican may meet you on your way Large TV screens will be found in the Family Resource Centre, Starlight Room and in the A, D and E Specialist Clinics waiting areas.

For more information: Go to www.rch.org.au/checkin or scan this QR code for more information about these two ways to check-in for your Specialist Clinic appointment and a link to download the app.

Clinic staff make every effort to see you as close as possible to your booked appointment time but sometimes there are delays.

Our thanks to RCH Corporate Communications for providing this article.

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Hospital Happenings... It is difficult spending special occasions in hospital so we endeavour to spoil our in-hospital families on Australia Day, Easter, Mother’s Day, Father’s Day and Christmas. We wouldn’t be able to do this without the generosity of companies and individuals who donate items for us to give to our families at special times during the year. Here are some examples of our support team spreading some much-needed cheer which is always appreciated.

Mother’s Day Morning Tea HeartKids organised a special morning tea for our mothers at The Royal Children’s Hospital on Thursday 8 May. Attendees enjoyed delicious food donated by PFD Food Services, Sweet Treats by Vanessa and Kraft.

Mother's Day Gift Bags On Mother’s Day our support team distributed 50 Mother’s Day gift bags to the mothers in Koala ward and Rosella ward. This year we were delighted by the generosity of supporters of HeartKids from companies supplying beauty products, nutritional snacks, drinks and delicious baked treats to individuals, families and community groups donating various goodies. It is truly inspiring to know there are such thoughtful and giving people. We thank all those involved - you helped make a mum smile this Mother's Day and we are grateful for making this possible. Special thanks to Crabtree & Evelyn, The Cake Angels Network, Melbourne Cookie Company, Morlife, Carman’s Kitchen, Le Reve, Go Natural, Avon, jarf & friends for their generous donations.

Easter 2014

On Easter Sunday we distributed Easter gift bags to families on Koala ward – thank you very much to everyone who donated Easter treats, everyone loved them. We gave the nurses on Koala and Rosella ward Easter gift boxes with delicious Melbourne Cookie Company cookies and Easter eggs.

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...at The Royal Children's International Nurses Day 2014

International Council of Nurses

International Nurses Day is an opportunity to celebrate nurses and their contribution to the health of society. It is celebrated around the world every May 12, the anniversary of Florence Nightingale’s birth. Each year, the International Council of Nurses chooses a theme for International Nurses Day discussions. The theme for 2014 was: ”Nurses: A Force for Change – A vital resource for health”. To celebrate the occasion HeartKids provided a special afternoon tea with seated massages for the wonderful Koala ward and Rosella ward nurses and delicious cakes for the Cardiac Theatre Nurses, Specialist Nurses and Clinic Nurses. HeartKids is constantly impressed with the nursing staff’s 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.

NURSES: A FORCE FOR CHANGE A vital resource for health

12 May 2014

International Nurses Day

Left to right: Nurses Day cake; Seated massages; Nurses Afternoon Tea

Introducing Dr Ari Horton This is meant to be a blurb about me. But for me, it is always about the amazing people and families that I meet. Your children may see themselves as a patient, but I see them as normal kids, and will try to make their time and your experience as comfortable as possible whilst supporting all aspects of your children's health. I am Ari, the current Cardiology registrar on Koala Ward. I have been a doctor for six years and hope to continue my training in Cardiology for many years to come. My special interest is in genetic heart disease s. I studied Medicine at Monash University in Melbourne but have been lucky enough to work in Australia, Canada and Nepal. My interest s include cooking, travelling and scuba diving. If you ever need someone to listen, let me know. But don't ask me to sing you might cry from laughter!

Support at MonashHeart

Our Family Support Coordinator ic on Sherrie McDonald visits the clin 0pm 4.0 0pm Wednesdays 1.0 Medicine Monash Children’s Clinic, Special ) Centre (next to McCulloch House 246 Clayton Road, Clayton

Jo - 39 Years Service In May, Koala ward clerk Josephine Xerri celebrated 39 years working at The Royal Children's Hospital. "Jo Jo" goes out of her way to care for the children and families on the ward. Congratulations and thank you Josephine!

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!

IN HOSPITAL

A special hello and our very best wishes to all the heart children who hav e been in hospital in the last three months.

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Reflections A Father's Grief

This delayed grief could then lead to a man either never really Losing a child is undoubtedly one of the most difficult and grieving in the way they need to, or they could always be traumatic experiences that anyone could ever face, and grieving because they were unable to grieve at the beginning. research shows it holds greater risk factors than any other loss. All men grieve when someone they love dies, but if they are to It is life changing and it is devastating, and you never think it heal, they must also mourn. anything will happen to you; until it does. The pain is beyond will you know you that One father I spoke to said he remembers distinctly breaking you ever imagined; you hurt so intensely with dies you of part A do. really never you down and crying when he was alone at a football match never recover. And months after his daughter died. your child, and the person you once were, is no more. You just have to learn to ‘live with the pain’, and somehow to go on. “I had been looking after my wife and helping her deal with are they her grief, as she was a mess and I was the stronger one at The grieving process varies for everyone whether coping different have individuals the time. And then it all just built up and gushed out without male or female, just as we as life; through us get to modes survival and warning. It was like I allowed myself to break down once I mechanisms made sure she was okay.” although generally males and females grieve differently. But are men the forgotten ones in all this pain and devastation? When a child dies, mothers find comfort in rituals or in keeping the for harder is the child’s memory alive with such things as writing, songs, In some ways the pain of loss of a child are they persona the outside the on why making special photo montages and spiritual ceremonies to fathers, which may be The feelings. inner their of reflection true a not is mark special days; in fear that the world could ever forget their presenting beautiful, precious child. To her, everyday and everything she mother carries the child, and that already creates a uniquely does for the rest of her life is a reminder of her loss, and she beautiful connection that a father cannot experience. Thus wants to scream it out with gestures and relive her memories. the misconception may then be that the father’s bond isn’t as Men generally do not have any inclination to communicate strong, which leaves a man feeling very lonely when he loses a their emotions in such a way. But does this mean they care or child. hurt any less, or that their love for their child is not as strong? After interviewing a number of dads, most felt like the first Absolutely not! Fathers miss their child as desperately as question people ask, after learning the news of a couple’s mothers do, even if they don’t display their grief in the same loss, is “How’s the mother coping?”. This is not to say that manner, and even if they don’t participate in the rituals. mother the no one cares about the father, but instinctively, and isolated feel may Men Men often feel the need to be active in the face of grief, is the first person we think of. are they emotions complex already the by throwing themselves into their work, exercise, chores, this can compound etc, in an attempt to distract themselves from their painful experiencing. feelings. Practical things can provide emotional relief and Let’s face it, men aren’t talkers at the best of times; how often self distraction from reality. Their effort attempts to keep the and beer a for do you hear of a group of mates going out negative and painful from penetrating their soul. However this because had they meltdown talking about the emotional does not mean they are not feeling the same sense of loss and they had a bad week? Whereas I can recall many an occasion torment the mother is, in losing their child. sipping a cocktail and discussing the emotional upheaval of So even if we think our partners don’t show their feelings of hurt everyday things such as juggling work, kids, housework etc, and pain like we do; even if they don’t cry when we do or talk only to be supported by words of love, wisdom and sympathy about the child we lost like we do; even if they don’t partake in by my girlfriends, and plenty of teary hugs. When tragedy and themselves, the ceremonies; it does not mean their hearts are not breaking strikes, women find it easier to express the hence feelings; their verbalising by and yearning for their child every day, as much as ours does. will process things internalise to tend Men begun. already has process healing Your way may be tears, cries, anguish, frustration and their feelings as they are hesitant to expose any emotional desperation, but his way may be private. There is no “right” vulnerability. way to mourn and men are not immune to feelings - their selfbe to need the feel still grief affects them as strongly as it does women. Simply put, Many men in our society also stereotypes the of because possibly strong, I remember my husband saying to me, “Just because I don’t contained and talk about our daughter as much as you do, it doesn’t mean I we have imbedded in us. They could feel pressured or a don’t feel the emotions you feel”. And he cries when he needs sense of duty to ‘fix’ the situation; thus they are left feeling as to, because it was his daughter that died too. helpless as they do devastated. Their sense of frustration and powerlessness to remove the pain for their loved ones, can “He looked over at me from across the room, and although be confronting as they question their ability to protect their his eyes were dry and his thoughts unspoken, I could partner and their family. This can be destructive as they build a look into the depths of his soul and see the pain and the wall of silence around themselves. anguish behind the facade of bravery he was depicting. All I was thinking was that it was taking every bit of strength Some men suppress their pain, or go through a delayed I had not to completely fall apart, and he was feeling the grieving process depending on the way the woman is coping you then it, losing is wife same; except that he was also trying to hold it together, so with the loss. One man said, “If your rest the otherwise together, everything I wouldn’t have to.” feel beholden to keep Written by Christina Georgiades apart”. fall will family of the "Grief is the constellation of internal thoughts and feelings we have when someone we love dies. Think of grief as the container. It holds your thoughts, feelings, and images of your experience when someone you love dies. In other words, grief is the internal meaning given to the experience of loss."

"Mourning is the outward expression of loss and grief. Mourning includes rituals and other actions that are specific to each person’s culture, personality, and religion."


Reflections Heart Angel Remembrance

In loving memory of Blaize Tyler-James Sherlock

We remember these Heart Angels whose birth date or anniversary is in the Winter months.

Born 22.04.2014

Birth Dates

Passed 05.05.2014 Rosella ward, RCH Although you only lived for 13 days you stole our hearts. My precious son you were taken too soon, you didn't stay very long but just know we are all so proud of you and the fight you put up. You tried so hard to stay here on earth. If love itself could have saved you, you would never have died. You will forever be loved and missed and never will you be forgotten. R.I.P beautiful boy

In loving memory of Michael Meares 19.11.2007 - 13.06.2014

My silent child Our precious baby, Close to my heart I'll keep you with me. An important job God has for you, There is love to give, And work to do. He needs an angel, Strong but small, To shine light on many And give love to all. Before you go, I give you this Half my heart And one last kiss. We'll miss you dearly That we know, But by God you were chosen, So to heaven, you must go. Author Unknown

Thinking of You

Our thoughts and prayers are with the families and friends of all Heart Angels in their time of loss.

Zach Beadel 5th June 2010 Jessica El Hassan 9th June 1993 Coco Du Chateau 11th June 2011 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 Alisha Woolley 1st July 2013 Cohen Lewis 7th July 2007 Stephanie Williams 16th July 2013 Summer Senior 18th July 2013 Charli Hartley 20th July 2009 Margy Kyberd 22nd July 1967 Matilda Annie Farley 27th July 2011 Jack Farley 5th August 2013 Corey Lake 7th August 2000 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 Summer Senior 18th July 2013 Paul Livingstone 19th July 1992 Avelynn Wood 20th July 2012 Makayla Cook 21st July 2012 Kristen Potts 23rd July 2007 Rowan Seward 25th July 2013 Matilda Annie Farley 27th July 2011 Charli Hartley 28th July 2009 Jacob Holden 11th August 2013 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

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Branch News HeartKids has a number of Branches around Victoria and Tasmania. You are welcome to contact your local Branch Coordinator to introduce yourself so the Coordinator can keep you informed about activities in your area. Please see contact details on the back page of this magazine and follow us on Facebook or watch the Events Calendar on our website for upcoming Catch-up dates: http://heartkidsvictas.org.au/events/

Our Sincere Thanks.... Two of our members have recently retired from being a Branch Coordinator. On behalf of all the families they have supported, we thank Amanda Riley for sharing the role at Burnie, and Sophie Werner for being available to help families in the Latrobe Valley for about 12 years. We warmly welcome a new Traralgon Coordinator. Please read about her on this page and find her contact details on the back page.

Traralgon Hi, my name is Christina. I am the My proud mother of seven children. d. chil rt hea my is tal, youngest, Crys Left stic opla Hyp with n bor She was Heart Syndrome (HLHS). Crystal spent five weeks in ICU and We then several weeks in Koala ward. tion were then sent to accommoda t for the next five weeks until her nex we so y, othl smo operation. That went lly were then able to go home and fina the all g doin is tal be a family. Crys things a baby should be doing. I was excited to be asked to be the n Branch Coordinator for the Traralgo to ard forw ing look ly real area. I am meeting other HeartKid families.

Geelong Branch Activities February - Bunnings BBQ Our Bunnings BBQ fundraiser was held on the 22nd February at Bunnings Waurn Ponds. It was a very successful day making a profit of $2300. There were many volunteers to help and it was well supported by the local community. Special thanks to Wayne, Jade, Shane, Aaron, Tina, Audrey, Tom, Robyn, Amy, Eileen, Cara, Jack, Paul, Kris, Kerri for volunteering their time and to Brumby's Bakeries and Hepburn Springs Drinks for their donations. Written by Geelong Branch Coordinator, Libby Gibson

Easter Fun at Geelong On Monday 21st April we had our annual Geelong Easter Picnic at Leopold's Gateway Sanctuary. Ten families enjoyed a sausage sizzle, Easter crafts and an Easter Egg Hunt with plenty of chocolate. We finished the day by feeding the ducks (now the most well-fed ducks in Victoria)!

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June Catch-up


Tasmania News On Sunday 27th April our Northern Tasmanian families held a get-together at the Anzac Park playground in Ulverstone. The weather was picture perfect and the children enjoyed playing in the park. The big slide was a huge hit. The event was organised by our Devonport Coordinator Claire Gluyas and our CEO Norm Hutton and Support Manager Tracy Stanley flew over for the day. It was a great opportunity for families to chat to Norm and Tracy, to ask questions and learn about the plans to better support our Tasmanian families. A big thank you to everyone for attending.

Branch Catch-ups

Bundoora Disco

Pakenham Catch-up

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Sharpie's Charity Challenge The 2014 Sharpie’s Charity Challenge was the 10th and Final Challenge. The event was a great day and we were very lucky with the weather. Everyone who participated in the event did a great job. The challenge this year combined elements of all previous challenges: • one can of baked beans • ride out to 1000 steps (approx. 30km) • 1000 steps twice • 50 push ups • ride to Albert Park (approx. 35km) • 50 push ups • run one lap of the lake (approx. 5km) • 2km swim at MSAC • one beer at the end to finish where it all started! The 2014 challenge raised $22,000 which was another brilliant achievement, now bringing the Foundation's total raised to just shy of $142,000! The Sharpie's Charity Challenge Foundation has supported HeartKids over the last five years, providing them with a portion of the amount raised each year which has now surpassed $70,000! A big thanks goes out to all this year’s participants and helpers for making it such a memorable day. The funds this year were donated to HeartKids and The Alfred Hospital. We would also like to thank all our sponsors for supporting us this year and throughout all the challenges - without them the Foundation and funds raised would not be nearly as strong. Furthermore,

we would like to thank you, the public, for your donations this year and in the past, as without your support there certainly would not be a Foundation. There are a few things in the works for the future, however the challenges have now finished and we are moving on to a new chapter in the Sharpie’s Charity Challenge Foundation world! Keep your eyes open for what we will be doing in the future, where many more of you can partake.

HeartKids Night of Nights

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Friday 9th May saw the Rotary Clubs of Tullamarine and Keilor once again conduct their Annual HeartKids Night of Nights fundraiser. In its ninth year, the event raises funds for HeartKids Victoria/Tasmania, with every dollar going to the charity. Despite being down in numbers compared with previous years, the end result was beyond expectation which resulted in a magnificent night and funds raised in excess of $30,000. Chairman of the organising committee, Rotarian Anthony Flapper (also a Board member of HeartKids Vic/Tas) opened proceedings with a welcome and explanation as to the reason for the event. Italian tenor Lino Del Guidice took over as MC and included a special performance of an Italian operatic song that was a result of the live auction. We were privileged to have HeartKids parent Samantha McGowan share her story about her daughter Scarlett’s fight with CHD. She was supported by several other HeartKids parents and family members, as well as HeartKids Vic/Tas staff members and board members. Great food and wine was enjoyed and thanks must go the Ultima Function Centre for their ongoing support of

this event. The grand ballroom looked amazing. Entertainer for the night was Mark Andrew, a leading tribute artist, who showed us many of his talents bringing out Dean Martin, Buddy Holly, Tom Jones, Austin Powers and the one and only Elvis. By the end of the night he had many people up and dancing and his charm as Austin Powers had a few of the girls getting a bit excited. Throughout the night, balloon raffles took place, silent auctions created bidding interest and the live auctions saw some fierce bidding which meant more dollars being raised. The main items of the live auction were a ride in Lindsay Fox’s private helicopter for six people over the bay and CBD, and a fully catered corporate box at Etihad for any game this season. Between them they fetched $8000 and we thank both winning bidders for their support in the bidding wars. All in all a great night was had and an amazing result given the numbers present. Many thanks go to the organising committee for once again putting on a wonderful show and next year we hope to have more people there supporting a wonderful cause as well as having a sensational and enjoyable evening.


Makayla Cook's Charity Golf Day

The second Makayla Cook’s Charity Golf Day was held on Good Friday 2014 at The Drouin Golf & Country Club. The day was held in memory of our beautiful baby Makayla, who passed away at just 33 days young from a comple x congenital heart defect. One hundred and eighty golfers braved the cold and wet conditions for a fun day of golf. There were two barbeques on the course which were very kindly run by the Waverley and Berwick Kiwanis clubs, while drinks carts regularly served thirsty golfers on the course all day. Golf was followed by food, presentations, a live auction and raffle, and live music back in the club rooms. The day was once again a huge success and we were able to raise a total of $29,510 for HeartKids Victoria/Tasmania. Major sponsors of the day included Stuart Cook, JHJ Creative Jewelle ry, Robertson Wouters, KPR Financial and Marketing Services, Andrew Patterson and Ebony Price. We also had a huge amount of support with very genero us donations made in the way of the raffle and auction items, as well as prizes for the golf competition. We are so proud and humbled to have held such a successful event in memory of our baby Makayla, and to support HeartKids Victoria/Tasmania. We look forward to organising another fantastic Makayla Cook’s Charity Golf Day in 2015. Leon and Jackie Cook

Makayla Sue Cook 18/06/12 – 21/07/12

A Night for Tina

A 'Night for Tina' Movie night was held on Saturday 7th June. Friends, family and the community of Benalla came together in memory of Tina Nelson as part of a movie night fundraiser for HeartKids. Tina passed away on 3 March 2013 from Hypertrophic Cardiomyopathy and since then her family and friends have raised over $32,000 for HeartKids. This year, in addition to the movie night, an online auction was also held and the event raised $5,200. "We are elated with the generosity and support of the community," exclaimed Tina's husband Matt. "Tina was so passionate about HeartKids and, as both of our boys have the same condition as Tina, we want to continue to raise money for this important organisation. We are also comforted that, an amazing person in life, Tina continues to help so many people since her passing". http://www.inmemoryoftina.com/

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Thank you for your recent gifts... 2ds creative

Cook, Jackie & Leon

Hume Region RDV

Mortgage Choice

Sharp, Joshua

Alexandra Foodworks

Cool, Alistair

JHJ Creative Jewellery

Mueller, Susan

Ample Café and Bar

Coulston, Lynette

Johnstone, Tanya

Murtagh, Elise

Sharpies Charity Challenge Foundation

ANZ Docklands

Cradle Coast Sports & Events

Kay, David

Nelson, Matt

Kay-Class, Teena

Nester, Sophie Novello, Matthew

Dodgson, Norman

Keefer Bros (Aust) Pty Ltd

Drew, Tammy

King, Denis & Anne

D'Silva, Christine

Kiwanis Club of Shepparton

Austin, Monica Bainbridge, Prudonce Balfour Bus Lines Bardot Pty Ltd Biggin & Scott

Department of Justice

Ebery, Kathryn

Blackmore, Sarah

Epic Photography

Blyth, Emma Borg Manufacturing Braico, Paul Campbell, Emmeline Catalan, Meagan

Evans, Mick Featherston, Kevin & Beryl Fifer's Building Supplies Flapper, Anthony

Cater-Maggs, Shae City of Greater Bendigo Coady, Jay

Flaver Café Giblin, Lisa Godfrey, Adrian

Cole, Tracy Commonwealth Bank Staff Social & Charity Club Vic Compston, Julie-anne

Gordon-Cooke, Diane Grimbos, Anita Gruber, Maria Holman, Angela

Little Richard Lupton, Louise Lyn Marc Textiles Maciula, Natalie Magistrates Court of Victoria Makayla Cook's Charity Golf Day Mason, Kellie Mastek, Aneta Mazenod College Mekhael, Emmanuel Moran, John Moran, Lyn

Obieglo, Victoria Ole, Erin Parkville Store Paszkiewicz, Daniela Point Cook Netball Club Poppy & Miff Jewellery Price, Matthew Pryce, David & Sonya Quinane, Bianca Ray, Paul Rotary Club of Hazelwood Rotary Club of Keilor Rotary Club of Tullamarine Scott, Michelle Shamrock Hotel

Signwave Smith, Alan Specsavers Pty Ltd Stanley, Kiana Stewart, Lesley Tang, Peter & Joyce TasTAFE Client Services Terrill, Mark The Art Cabriolet The Australian Cake Angels Network The Rose Lifestyle Village Thomas Carr College Thomas, Fr. Donald Wedderburn Community College Wertheimer, John Z Transport Group Memorial Donations for Bevan Vanderwert

Financial contributions over $500 are acknowledged in this column.

Aussie Farmers Direct

Entertainment Book

Heart Kids Victoria have teamed up with Aussie Farmers Direct!

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

?

What’s Next

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

AussieFarmers.com.au/Fundraisingoffer AussieFarmers.com.au/Fundraising

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We are selling the new 2014 - 2015 Entertainment™ Books as a fund-raiser and this year you have a choice – the Entertainment™ Book or the NEW Entertainment™ Digital Membership! The cost of each is $65. Please support us and order on-line https:// www.entertainmentbook.com.au/ orderbooks/180y947


Sponsors and Supporters Victorian Partners:

National Supporters: Founding Sponsor

Principal Partner

Major Partners

Foundation Partner

Corporate Supporters

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 

 

Diary Dates

artKids r - Cuppa for He  August/Septembe  turday 2 August - HK Education Day Sa sh Dance  gust - Ballarat Bu 'n Day  Saturday 2 Au uc Ed y str gi Re an Z Font Sun 3 August - AN  on ff The Cuff' Lunche 'O  Friday 8 August s Bendigo st - Circus Quirku  Thursday 21 Augu  uirkus Melbourne Q s rcu Ci st gu Sunday 24 Au  nificent Miss'  Sunday 24 August - 'Mag ' es ov Ho ts & ber - 'Hearts, Ha  Thurs 18 Septem ily Camp m Fa  September Weekend 19-21 ains Day  ober - Box Hill Tr  Saturday 11 Oct n ho at ar M e rn ou er - Melb Sunday 12 Octob Fun Run   Sunday 26 October - Hoffy's Rainbow de r - 24 Hour Bike Ri  rday 8 Novembe tu Sa  ht lig nF Fu r be m Sunday 9 Nove

eck inside or go

these events ch For more about victas.org.au to www.heartkids

MELBOURNE METRO BRANCHES Bayside Cassie Clarke 0499 741 116 cassielouisehk@gmail.com East Bentleigh Maggie Stavrou (03) 9563 7133 maggiestavrou@live.com.au Bundoora Amy Heafield 0421 518 366 amy.heafield@heartkids.org.au Dandenong Lucy (Fatima) Hussain 0430 738 820 Melton Lauren Tyrrell 0424 594 757 lauren-tyrrell@hotmail.com Pakenham Joanne Arrowsmith (03) 5967 7083 joarrow@bigpond.net.au Point Cook Karen Howard 0413 023 557 pobox2611@gmail.com Tullamarine Adele Luca 0408 312 662 adeledichiera@hotmail.com Wantirna Janita Felici 0422 976 024 janitafelici@gmail.com REGIONAL BRANCHES VICTORIA Albury/Wodonga April Schubert 0407 551 967 (02) 6056 6448 april.schubert@bigpond.com Bairnsdale Caroline Foard 0438 928 821 cfoardy@yahoo.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: heartkids@heartkids.org.au Facebook: HeartKids Victoria/Tasmania

www.heartkidsvictas.org.au

 

Contact Details Ballarat Rohini Dobell & Alan Smith 0407 851 648 alan_17@live.com.au Bendigo Natasha Prendergast (03) 5441 8262 or 0421 590 169 goliathgroup@bigpond.com Cobram Bianca Quinane 0419 674 408 biancz1979@hotmail.com Echuca/Moama Tracey Hard 0438 962 056 tracnsteve@bigpond.com Geelong Libby Gibson (03) 5250 2439 0411 057 905 libway2000@yahoo.com Horsham Gaynor Baker (03) 5384 2280 mtbcarpentry@bigpond.com Kyneton Lauren Roberts (03) 5427 2696 laurie102@hotmail.com Mildura Fiona Dowie 0438 396 790 ryan.dowie@bigpond.com Portland Kerry Sluggett (03) 5523 2503 0418 312 320 ksluggett@iinet.net.au Shepparton Cheryl Alexander (03) 5825 4005 chezalex70@bigpond.com South Gippsland Kerrie Disney (03) 5182 5531 0409 950 608 urme2@tpg.com.au

Traralgon Chrissy Ades 0400 857 813 cat_razor@hotmail.com Wangaratta Lisa Dekeling 0421 655 636 & Shane Hack 0488 221 184 lisadekeling@optusnet.com.au Wonthaggi Erin Howell 0431 702 863 howells.8@bigpond.com TASMANIA Burnie/Devonport Claire Gluyas 0408 351 661 richardsclaire@yahoo.co.uk Hobart Paul Hyland (03) 6247 8435 0418 561 504 paul.hyland1@bigpond.com Launceston Kylie Smith (03) 6393 6240 0448 983 587 kylie.smith@heartkids.org.au SPECIAL INTEREST GROUPS 22q11 Audrey Cater (03) 9394 7965 0420 500 905 audrey.cater@bigpond.com BEREAVED FAMILIES EMAIL SUPPORT http://www.hearts-of-hope.org/ support/bereavment/intro.htm CARDIOMYOPATHY ASSN of AUST. Website: www.cmaa.org.au/

DOWN SYNDROME Sam Jackson 0439 360 035 mummee1973@optusnet.com.au Stawell EBSTEIN’S ANOMALY Leanne Amarant Kathy Sims (03) 5831 1110 (03) 5358 2945 or 0419 864 412 kjsrms@bigpond.com leanneamarant@hotmail.com

hearts4heart - Support for Adults with Heart Disease Tanya Hall 0426 240 636 info@hearts4heart.net.au hearts4heart.net.au HYPOPLASTIC LEFT HEART SYNDROME & SIMILAR CONDITIONS www.hearts-of-hope.org Leanne Amarant (Victoria) (03) 5358 2945 Leanneamarant@hotmail.com Csaba Ovari (Tasmania) (03) 6229 8169 csaba.ovari@hearts-of-hope.org KABUKI SYNDROME Stacey McKiernan (03) 5275 1542 stacey@sakks.org Website: www.sakks.org KAWASAKI DISEASE Shirley Mates (03) 9894 1257 info@kdfoundation.org.au Website: www.kdfoundation.org.au LONG QT SYNDROME (LQTS) Sherrie McDonald 0431 544 510 sherrie.mcdonald@heartkids.org.au www.sads.org.au or www.sads.org.uk/ MULTIPLE BIRTHS April Schubert 0407 551 967 (02) 6056 6448 april.schubert@bigpond.com MUSLIM FAMILIES Lucy (Fatima) Hussain 0430 738 820 OVER 18’s Erin Cervelli (03) 9513 9030 PACEMAKERS Mandy Tichelaar (03) 9728 6984

2014 winter heartkids victoria tasmania magazine  

Magazine for families and friends of HeartKids Victoria-Tasmania

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