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VICTORIA Winter 2012

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Quarterly Magazine for Victoria and Tasmania

Volume 22 Issue 2

I naugural HeartKids Cup

* Inspirational Hoffy *

Hospital Highlights 

support

awareness

research

advocacy


Matters of the Heart Chief Executive Officer The past quarter has been extremely busy with some incredible efforts from individuals and teams on HeartKids’ behalf. We really appreciate the multitude of fundraisers and special events that are run by all of you but, unfortunately, can’t feature them all in the magazine. It is impossible to put into words just how grateful we are for this continued support. We know that each comes with its own sacrifice. But do know that it is because of all these fundraisers, regardless of size, that we have the ability to continue to provide our support services and to now extend those services to benefit even more families. So please keep up the great work. To this end you can read about a new initiative that we are introducing called “Camp Getaway”. A camp for children aged from 10 to 13 that we think will not only be a great escape for the kids but will also bridge the gap between our family camps and the national Teen Camp. Tracy and I visited the site recently and have locked in the camp for the weekend of 12 – 14 October this year. You will also see in this edition some of the incredible efforts made by a number of our supporters. It is humbling to witness first hand the effort that these special people have put in on our behalf. With the inaugural HeartKids Cup between North Melbourne and the Sydney Swans we kicked off a new relationship with two wonderful AFL Clubs that have been touched by our cause and therefore share our passion. We held our ‘Capture a Heart’ Gala Ball on the 15th June and suffice to say that a great time was had by all who attended which is a reflection of the great job done by the Events Committee in organising the night. Shaun’s Party was also held that evening. Look out for more details in our next magazine when we will bring you a full report of both events. Our Ambassador Glenn Archer, accompanied by young Ambassador, Christian Williams, will again complete Run Melbourne on our behalf. I encourage all the readers of this magazine to get behind Glenn by sponsoring him and help him to once again be the highest individual fundraiser in the event. All the funds raised by Glenn go to HeartKids. Alternatively, if you would like to participate in the run yourself, you can join our HeartKids team and do your own fundraising. Good luck. We continue to respond to the messages of last year’s member’s survey. One of which was the importance of support at the hospitals. To this end, we have extended our support coverage to help Tracy and now have Sherrie or Amy at the RCH Tuesdays through Thursdays and Sherrie at MonashHeart on Wednesdays. We awarded our second annual bursary to a member of the hospital medical staff to help improve the level and/or quality of care for our children. Finally, we were able to obtain a sponsor in Scott Frew, of Distribution Central, to donate a number of iPads to be used by the children on Koala Ward for their school work. Again, my thanks to all the staff, volunteers, associates and members who make HeartKids the special organisation that it is and I hope you gain similar insight by enjoying the stories contained in this edition of our magazine. Terry Hopkins CEO HeartKids Victoria

ts children with heart HeartKids Victoria proudly suppor Tasmania. disease and their families throughout r to the back page For Tasmanian enquiries - please refe s’ contact details. ator for our Tasmanian Branch Coordin

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Our Team HeartKids Victoria Board 2011-2012 * Chairperson: Gary Karatjas * Vice Chairperson: Natalie Palmer * Treasurer: Deborah Bowling * Secretary: Lauren Trengove

* General Board Members: Karin Burgess Phil Riggio Chris Palmer David Cohen Toni Planinsek Terry Hopkins

HeartKids Victoria Employees * Chief Executive Officer Terry Hopkins 0478 085 480 terry.hopkins@heartkids.org.au * Support Manager Tracy Stanley 0478 091 773 tracy.stanley@heartkids.org.au * Family Support Coordinators Sherrie McDonald sherrie.mcdonald@heartkids.org.au Amy Heafield amy.heafield@heartkids.org.au

* Support Events Coordinator Lynette McCoullough lynette.mccoullough@heartkids.org.au

* Administration Assistant Amy Emmett amy.emmett@heartkids.org.au * Membership/Magazine Coordinator Margaret Patullo margaret.patullo@heartkids.org.au * Magazine heartkids@heartkids.org.au

this magazine is of the personal stories in may be Permission to reprint any rson. Any other articles irpe Cha the or or auth . required from the oria Vict ds ledgement to HeartKi reprinted with an acknow ine do not imply published in this magaz Please note that articles HeartKids Victoria. of s view rall ove not reflect endorsement and may d stories represent nions expressed in chil h Also note that the opi ails are specific to eac det l dica me t tha and personal experiences ilar to your child’s, sim ear app y ma ons diti case. Although the con specific information Parents requiring more other details may differ. . gist iolo card ir child’s should check with the

Front cover: The inaugu ral HeartKids Cup presen ted by North Melbourne legend and HeartKids Ambassador, Glenn Archer, to the Swans co-captain Jarrad McVeigh. Thanks to all who sent photos and information for this edition. Contributions are always welcome - send to: heartkids@heartkids.org .au Thanks to Fuji Xerox and Documents On Call for printing our magazines. Thanks to Gordon Patullo for post processing of some digital images.


Coming Events Run Melbourne - Sunday 15th July

run The Age Run Melbourne offers participants a half-marathon, a 10km on Square tion Federa at g and a 5km run or walk starting and finishin Sunday 15 July. Please join our HeartKids Team with some of our celebrity ambassadors and fundraise for HeartKids. Our team is “HeartKids Victoria”. n There is also a Kids Run for children aged between four and fourtee day (the JULY 14 DAY, SATUR on 10am at held be years old which will around before the main event). The Kids Run is a 3km off-road untimed run ation particip for the banks of the Yarra. All children will receive a medal and a showbag of goodies at the finish line. http://www.runmelbourne.com.au/

Cuppa For HeartKids

Cuppa for HeartKids is being held in August and September this year.

Circus Quirkus Date: Sunday 26th August Show times: 11.00am, 2.00pm and 5pm Location: Festival Hall, West Melbourne We will be booking tickets for our members to attend the Circus Quirkus email event again this year. If you would like free tickets to this show, please her ring or au ds.org. heartki llough@ Lynette McCoullough: lynette.mccou on 9333 1586 or 0418 548 879. Please give the following details: your name, address, number of tickets to required (for your immediate family) and which session you would like to posted be will Tickets babies. attend. Everyone needs a ticket including you close to the event date.

Candlebark Farm Family Camp

Date: Friday 21st – Sunday 23rd September Venue: Candlebark Farm, 531 Healesville-Koo Wee Rup Road, Healesville (60 kms from Melbourne, 6 kms from Healesville). See website: www.candlebarkfarm.com.au Time: Arrive after 5pm Friday and leave after 3pm Sunday. e to HeartKids members who have a heart child or heart angel are welcom Farm. register their interest in attending this family camp at Candlebark to Your family will have a relaxed but fun weekend and you will be able meet other HeartKids families. units Accommodation is Camp style with bunk beds; 6 bed units and 8 bed to need might families Some toilet. and shower own their with available, all who family share rooms. Please note: If we are not able to cater for every not wants to attend, we may need to give priority to families who have family iate immed your attended family camps before. Please only register e. possibl as families ds so we can accommodate as many HeartKi No cost to attend: this camp is generously sponsored by the Kiwanis Clubs of Division 6, so there’s no charge to families attending. your Register: we invite you to apply for consideration. Please indicate /bnna ng.com ybooki interest by booking on www.tr s.org. For further details, contact Lynette on lynette.mccoullough@heartkid au or 9333 1586 or 0418 548 879. will be RSVP Wednesday 1st August 2012. Offers of a place at the camp 2012. August 10th made by Friday

“Camp Getaway” - 12th-14th October

Getaway, We are excited to offer a camp for heart children aged 10-13 at Camp in a fun, safe s activitie of number a offer will camp The ). Bendigo (near Axedale ers and and supportive environment, under the supervision of specialist volunte medical team. Stanley Invitations will be sent to eligible families shortly. Please contact Tracy au ds.org. heartki for further information E: tracy.stanley@

In This Issue 2 Matters of the Heart 3 Coming Events 4-5 Inspiring Initiatives 6 Heart Child Achievements 7 ‘Hearts & Minds’ Study Update 8 MonashHeart News 9 National Year of Reading at RCH 10 Special Days at RCH 11 Transition to Adult Care 11 HeartKids Bursary 2012 13 News from Tasmania 14-15 Child Story - James Bronstein 16 HKA News & Merchandise 2 17 Reflections 18 Recent Events 19-22 Donations and Fundraising 24 Diary Dates

Box Hill Miniature Train Day

Date: Saturday 13th October Venue: Cnr Elgar & Belmore Rds, Box Hill Nth. Melway ref: 47 B4 Time: 12 noon free sausage sizzle lunch; free train rides 12.30 - 2pm Meet at 11.45am in the park next to the train station in Belmore Road and register with our HeartKids representative who will record your family’s name and provide you with a name badge. Thanks to the generosity of the Kiwanis Club of Waverley and the Box Hill Miniature Train Society, we are able to offer our families this free fun day out. BYO picnic rug, chairs, tea or coffee and camera. There will be time to play on the playground during lunch, so make sure you bring a hat. (No open-toed shoes to be worn on the train). To register for this event, please book by Friday 28th September at: www.trybooking.com/bnnj Please only book for your immediate family so we can cater for as many members as possible. For further details or cancellations, contact Lynette on 9333 1586 or 0418 548 879 or email lynette. mccoullough@heartkids.org.au

Myuna Farm Day Keep Sunday 11th November free for a great day out at Myuna Farm. Further details about how to register will be in our Spring magazine.

2012 Dates for Christmas Parties

Put the dates in your diary for our Christmas Parties in Melbourne, Geelong and Tasmania see Diary Dates on page 24. More details in the Spring magazine.

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Inspiring .... Hea rtK ids Cup The inaugural HeartKids Cup was played at the Sydney Cricket Ground on Sunday 22nd April between AFL teams North Melbourne and the Sydney Swans. The game has been introduced as an annual event between the two teams as a centrepiece for us to raise awareness about childhood heart disease across Australia and raise funds for HeartKids. It was an initiative of Ambassador Glenn Archer and Terry Hopkins, and implemented due to the fantastic support of former North Melbou rne CEO, Eugene Arocca, Sydney Swans CEO, Andrew Ireland and Swans co-capt ain Jarrad McVeigh and his wife Clementine, who lost a child to heart disease last year. Our sincere thanks to all of those mentioned as well as the PR and events crews of both teams for making this year’s event such a great success . The day was also supported by HeartKids NSW who share in the running and proceeds of the day and help to make this an event of national significa nce. The game sparked media interest in all states with each of the respect ive HeartKids offices having the opportunity to gain important awareness coverage in their local state as a result. The Channel 9 Footy Show mentioned us in their pre-game summary and the game was telecast live on the day on Channe l 7 as well as a number of radio stations with HeartKids given frequent mentio ns. Unfortunately, for those of us in Victoria, the Sydney Swans won the game and took home the inaugural cup, however, as you can see on the cover, this led to a very appropriate photo opportunity with Glenn presenting the perpetu al cup to Jarrad at the end of the game.

HeartKids Night of Nights

The HeartKids Night of Nights held at Ultima Reception Centre on 25 May was the 6th annual event organised by members of the Tullamarine Rotary Club. Organising Committee Chairman, Conrad D’Cunha, led his team with his usual passion and the night was a great success raising over $32,000 for HeartKids Victoria. Master of Ceremonies for the night, George Donikian, pictured right, did a terrific job hosting the festivities and those in attendance had a great night dining on the delicious food and drink before embarking on a night of fun with silent and live auctions, raffles and dancing to the music of the band ‘Love Shack’. Special thanks must go to the major sponsors; Rugs Galore, Mirabella, Hairhouse Warehouse – Watergardens and Geelong, Melbourne Kia Dealers, Michael Schiavello and Gecko. But also, to the organising committee who have done this for six years and still show real passion for HeartKids and our cause. All of us at HeartKids thank you from the bottom of our hearts.

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Terry Hopkins, centre, accepting the cheque from the organising committee

The Dan iel Red die Fou nda tion

Daniel Reddie, or “the Reverend”, as he was known to his friends, family and girlfriend Lara Lynch, was a young man from Geelong who was a keen sportsman, music lover and friend to all. Tragically, he lost his life when he was twenty-six years old, which was caused by an undetected heart defect plus the complication of Bacterial Endocarditis. Daniel was travelling overseas with Lara when he suffered a cardiac arrest. To honour Daniel and to celebrate what would have been his birthda y, Lara, Daniel’s brother Luke and sister-in-law Sofie, supported by family and friends, established the Daniel Reddie Foundation. In March they ran an event called ‘Reverend Reborn’ at the Pier in Geelong. The event included music and fundraising activities and was attended by over 700 people. The funds raised were to benefit HeartKids Victoria and Defib Your Club for Life. Over $36,000 was donated to HeartKids Victoria. Very special thanks to Lara, Sofie and Luke for their amazing effort in bringing the evening to life and staging a wonderful event. Also, thanks to Libby and the HeartKids Geelong Branch for their support throughout the night.


.... Initiatives Hoffy’s Burpee Challenge

On 14th April, Julie Hoffmann completed her 2nd annual burpee challen ge to raise funds for HeartKids Victoria in memory of her niece Stacey, who would have turned 18 in March this year. Thanks to Hoffy’s determination and stamina this event has become an annual ritual. We thought Hoffy was inspirational last year in completing her 1,000 burpees in under an hour and raising over $4,500 but in her inimitable way she pledged to do better in 2012 and she didn’t let us down. Despite suffering from a virus for the three weeks prior to the challeng e, Hoffy had set her sights on establishing two new world records for burpee s as well as surpassing last year’s effort in the fundraising stakes. Even with her interrupted training schedule leading into the big day, she managed to set one world record, narrowly missing the second, and set a new record for individual fundraising for HeartKids Victoria amassing $50,000 in funds raised. A special thanks to Hoffy from all of us at HeartKids Vic and also to her sponsors (Telstra, 7 Eleven, Tupperware, Open 2 View Victoria, Lodge of Australia Felix No.1, Mars, DNC Concrete Paving, Acrylic Display Industri es, Flavour Makers, Award RV Superstore, iKapture, Barry Plant Emerald , Intrepid Powder-coating, 4 Paws Boarding Kennels and Emerald Rotary Club) and her donors for recognising not only the importance of our cause but also the importance of supporting a dedicated and selfless fundraiser like Hoffy. Congratulations and thanks Hoffy, you definitely put your body on the line for us and we appreciate it very much.

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Heart Child Achievements Mia Cowley Here’s a picture of Mia running at her athletics carnival recently. She was putting in her best effort and was just loving the experience! Mia’s family want to encourage those with younger children that anything is possible!

Gianna Earl Here are some pictures of Gianna’s first day at kindy. She is currently waiting for the Fontan Procedure but in the meantime is enjoying kindy 3 days a week.

Ethan Blackmore Gabrielle O’Sullivan

Ethan was awarded a kindymites yellow belt grade through discipline, attendance, skill and good manners in the art of karate.

Gabrielle is eight years old. She recently took part in her first swimming carnival at Aquastar Swim School Moorabbin. She came 1st in backstroke, and 2nd in freestyle. Her family are very proud of her!!

His family are so proud of him.

Shae Denahy Shae has never let her heart condition slow her up. She was very proud of herself when she won the best and fairest player award for her netball under 11’s netball team last season. Shae also plays basketball and tennis and can’t wait to get back into all the sports she loves after corrective surgery for Ebsteins anomaly in February. 6

Thomas Federico HK Thomas started prep at St Thomas the Apostle in Blackburn this year. He loves school and is enjoying all the new experiences.


Hearts & Minds Study Update It’s now nearly 7 years since the study began, with 75 newborn babies recruited to our study of childhood development in babies born with congenital heart disease. Our 2-year follow-up was completed in 2008, and we have just started the 6-year school-age follow up!

2 Year Outcomes The ‘Hearts & Minds’ team has published 4 papers in international medical journals, based on the first 2 years of the study. Our results have also been presented at many local and international conferences. The most recent paper published in June this year, looked at the relationship between seizures that occurred around the time of surgery and 2 year neurodevelopmental outcomes. Combining data from our colleagues at Auckland’s Starship Children’s Hospital, we found that seizure activity on the brainwave monitoring was common, during or very early after surgery. Interestingly, the presence of seizures did not impact children’s language or motor skills at 2 years of age. Some of you will remember Dr Julia Gunn, who coordinated the hospital tests, and followed-up all our participants at 2 years. Julia was awarded her PhD in 2011, and is now a Neonatal Specialist, and runs the outcomes clinic for high risk newborns at The Royal Children’s Hospital. For those of you that remember Lara Shekerdemian, she is now the Chief of Critical Care at Texas Children’s Hospital.

School Age Outcomes The Hearts & Minds Study is now in a new phase that started in 2012. We are currently following up all Hearts and Minds participants, at around the time of school entry at 6 years of age. Louise Crossley, who joined the Hearts and Minds team in 2011, will be leading this

phase of the study. Louise is doing a PhD at The University of Melbourne, in the Department of Psychology. Professor Vicki Anderson is also a new member of the team. Vicki is the head of the Psychology Department at The Royal Children’s Hospital, and the Critical Care & Neurosciences research theme at The Murdoch Childrens Research Institute. Vicki and Lara will be supervising Louise throughout her PhD. The 6-year assessments will take place at The New Royal Children’s Hospital! We will do a series of developmental tests for all children, looking at areas such as IQ, attention, language and behaviour. We will also ask you to complete questionnaires about family functioning. This is because we know from research in children with other conditions, that the family environment can be impacted by childhood illness, and that this can affect childhood development. The School Age study includes an MRI brain scan, very similar to the scans that were part of the newborn study. To help each child prepare for an MRI scan, we do a practice session in the mock MRI room. We first explain to the child the different steps involved in having an MRI, using pictures and a toy model. After this, we then do a practice in a mock MRI machine. This is very similar to the real MRI machine. The child can feel what it’s like to be in the MRI machine and hear the sounds the machine makes. What is really fun about the MRI machine is that the child can also watch a DVD while the pictures are being taken! On the right, you will see a picture of the mock MRI machine at the new Royal Children’s Hospital. A new and really important part of the study is that we will also be testing a group of healthy children without heart

disease. This ‘control’ group will all have identical tests to the Hearts and Minds group. This will help us to better understand how heart disease impacts on development in childhood. If you know of any families with children aged 6 years, who do not have heart disease or any other major childhood illness, and might be interested in participating in our study as a ‘control’, please let us know! All families who participate in the 6-year assessment will receive a detailed report afterwards. As always, we are so grateful to all of you for supporting such an important project, and look forward to meeting you over the next year or two! If you would like to know more about the new phase of our study or have changed your contact details, if you know of a 6-year old who might be able to take part as a control, or if you’d like to send us photos or updates - please contact Louise Crossley louise.crossley@mcri. edu.au or (03) 9345 6590. Dr. Lara Shekerdemian, Prof. Vicki Anderson, & Louise Crossley Hearts & Minds Study

Coffee Mornings

Regular Coffee Mornings have been held at Tullamarine (left), Pakenham (right) and Bundoora (below). Families with young adult heart kids recently met for an annual lunch (photo lower left).

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MonashHeart News Heart Starters In a very exciting initiative, MonashHeart will broadcast a 13 episode documentary style TV program on C31, each Monday night at 7.30pm from 4th June 2012. The program is called Heart Starters and gives a glimpse of the amazing work MonashHeart does in saving and improving the lives of Victorians. MonashHeart is the largest cardiac service in Victoria, and indeed one of the largest in Australia, providing cardiac services to people of all ages; from pre birth to our older citizens.

heart disease since birth, a patent forum ovale (PFO), only diagnosed when she collapsed with a sudden and debilitating stroke. Sally’s story is followed, with viewers witnessing her PFO being closed in the cardiac cath lab.

Heart Starters follows the remarkable stories of some of our heart patients, including heart children, as they journey on the road to recovery; from initial diagnosis, treatment, procedure or operation and through to recovery.

Sally on the morning after her procedure with her family

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Filming of Heart Starters in the cardiac cath lab

Episode one follows the story of 31 year old Sally, mother to  eighteen month old Jasmine, who had undiagnosed congenital 

Episode two looks into the events of 13 year old Troy’s cardiac arrest on the football field one Saturday last year. Troy was so fortunate to receive effective CPR by bystanders at the game, being resuscitated by the MICA ambulance, before being admitted to Monash Medical Centre Intensive Care Unit in a serious condition. Troy’s rare abnormality of his main coronary artery supplying his heart, an anomalous left main coronary artery, was diagnosed on MonashHeart’s 320 slice cardiac CT scanner, enabling his cardiologist Associate Professor Sarah Hope to see that the only treatment was open heart surgery. A few months later we see Troy return to the football ground where he nearly died, returning to the game he loves. Watch Heart Starters each Monday night on C31 at 7.30pm, with episodes being repeated on Friday morning at 1am and 9am.

To learn more about our Heart Starters program see our award winning website: www.monashheart.org.au

The Channel 31 website has a section called Catchup TV where you may be able to see episodes which have already been to air.

http://www.c31.org.au/program/view/program/heart-starters

Support at MonashHeart

IN HOSPITAL

st wishes d our very be an llo e h al ci in hospital A spe ho have been w s d ki t ar e h to all the e months. in the last thre

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Our Family Support Coordinator Sherrie McDonald visits the clin ic on Wednesdays 1.00 pm - 4.00pm

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


The Royal Children’s Hospital Drop Everything and Read at the RCH RCH Education Institute recommends… Tips for encouraging reading at any age

National Year of Reading 2012 celebrations at The Royal Children’s Hospital (RCH) just keep getting bigger and better with more and more activities, author visits and competitions to inspire young learners to discover a love of reading. In April, a silent Flashmob of bookworms appeared in Main Street where heart children joined with the Education Institute in a ‘Drop Everything and Read’ event to highlight the benefits of reading for just 20 minutes per day. The group made quite a splash in Main Street attracting a few bemused looks from passersby and others who were keen to join in as they sat down for some spontaneous reading time. Among the other exciting National Year of Reading initiatives on offer at the RCH, the Education Institute is participating in the Premiers’ Reading Challenge encouraging children and young people from Prep to Year 10 to rise to the challenge and reach their reading targets. Last year more than 220,000 participants read more than four million books. HeartKids is supporting the Education Institute and the Premiers’ Reading Challenge by donating books from the booklist so that even more heart children can participate in the Challenge and start reading. To participate, contact the RCH teacher on your ward to get registered and start reading. Prizes are up for grabs too! Each week, RCH teachers select a winner at random from students participating at the RCH. Visit www.education.vic.gov.au/prc for more information on the Premiers’ Reading Challenge. To keep up to date with National Year of Reading activities and events at the RCH visit: www.rch.org.au/education

Allow your child to choose. Your child is more likely to read something they’re interested in, so empower them to choose and find books they love. Read anything and everything. Reading is everywhere, try newspapers, magazines, directions, letters, recipes or signs. Make your own books. Reading and writing go hand in hand, so encourage your child to explore the creativity and fun of making and illustrating their own books. Visit your local library. Libraries are full of fantastic books, resources and events – and they’re free. Rediscover your local library today. Read to your children in all languages. If you speak more than one language, reading in both languages is a great way to build vocabulary and early reading skills. Instead of you reading, try audio books, CD’s, story time at your library, another adult or older sibling. Tell stories or sing - lyrics can be powerful. Put books everywhere so children can access them if they feel in the mood - in the toybox, in the car, in the nappy bag, in the pram. Model good reading habits. Children see everything, so model good reading habits. Boys particularly can benefit from seeing men read even if it’s the newspaper or footy record.

Useful websites • • • • • • • •

Education Institute www.rch.org.au/education National Year of Reading www.love2read.org.au The State Library of Victoria www.slv.vic.gov.au The Book Chook www.thebookchook.com The Little Big Book Club www.thelittlebigbookclub.com.au Victorian Premiers’ Reading Challenge www.education.vic. gov.au/prc Indigenous Literacy Foundation www.indigenousliteracy. org.au Tumble Books www.tumblebooks.com/library

Need more? Try “The Reading Bug…and how to help your child catch it” by Paul Jennings.

Thanks to the RCH Education Institute for providing this article

RCH Morning Teas

ilies are welcome to join us All ward, ICU and outpatient fam ys and Thursdays for morning tea, held on Tuesda nge on the 3rd Floor. Lou ent from 10:30am - 12:00pm in the Par re! We look forward to seeing you the 9


Special Days at RCH Celebrating Mother’s Day

Above: Everyone enjoyed the special morning tea Top left: Mother’s Day Cupcakes, and left: Mother’s Day Cookies.

The Thursday before Mother’s Day we held a special morning tea at the Royal Children’s Hospital for our mothers in Koala and Rosella wards. Very special thanks to The Cake Angels for organising the delicious cupcakes made by Sweet Treasures by Vanessa and the beautiful cookies made by Butterflies & Roses - Cakes by Peta. Everyone thoroughly enjoyed the special treats as you can see in the photos! On Mother’s Day our Support Manager, Tracy, distributed beautiful roses and goodie bags to mothers in Koala and Rosella wards heartfelt thanks to Fly Baby, Rolando Family, Boon Roses, The Cake Angels, Cake Envy, Little Big Company and Candy Soirees for your generous donations. The gifts were warmly received.

Above: Phoebe enjoyed her cupcake Left: Cake Envy Cookies for goodie bags, and right: Mother’s Day roses with the goodie bags

Easter Gifts

Little Special thank you to our friends at for gifts ter Eas g atin Tinkers for don d HeartKids to give to our Koala war . ents pati

Bardot Junior Flower Donation We were thrilled to receive a generous donation of flowers from Bardot Junior for our Koala ward families. The beautiful flowers were used at a Bardot Junior photo shoot. Special thanks to Deborah Bowling for organising the flowers for our ward.

Croquembouche Donation

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Dylan with his Easter gift

A huge thank you to The Cake Angels and Rhiain for donating a croquembouche for our Koala ward families to enjoy - a wonderful treat for a cold Saturday night!


Transition to Adult Care

The Transition process begins when the patient is around the age of 15 years and continues to 18 years of age or whenever the young adult finishes year 12 at school or its equivalent.

‘Transition’ is the process whereby a young person prepares to move from a Paediatric health care setting to an Adult health service. ‘Transfer’ occurs when the patient has their first appointment with the Adult health service and is no longer a patient of the Paediatric health care service.

The Cardiology department at The Royal Children’s Hospital (RCH) is committed to supporting both the young person and their family through the Transition process. Discussions commence in the outpatient clinic at around the age of 15. The clinic staff can show how to access relevant resources; see below for links to some brochures and factsheets.

The plans for ongoing care of the young adult are discussed between the cardiologist and patient during the Transition time. The most appropriate Adult hospital is chosen, after discussion with the patient, at the end of the Transition period. Both the Royal Melbourne Hospital and Monash Medical Centre offer Congenital Heart Clinics. The Alfred Hospital does continue the ongoing care of the Transplant and Pulmonary Hypertension groups of patients. Your cardiologist will organise a referral to the chosen Adult hospital and it is anticipated that you will be given an appointment by the Adult cardiologist within 3-6 months from the time of your last appointment at RCH. Informative brochures are available at the Cardiology section of The Royal Children’s Hospital website: www.rch.org.au Click on the tab ‘Departments & Services’. Look under ‘C’ for Cardiology, then under ‘Parent Info’ and ‘Transition (to care in an adult hospital) for 15-18 year olds’. Along with a Health Care Checklist and some suggested questions to prompt discussion with your cardiologist, you will see brochures for both The Royal Melbourne Hospital and the Monash Medical Centre: • Transferring to Cardiology Services at The Royal Melbourne Hospital • Transferring to Cardiology Services at Monash Medical Centre

The Royal Children’s Hospital website also has very useful resources regarding the process of Transition - look under ‘Departments & Services’ then under ‘T’ for ‘Transition to adult health services’. This general Transition website includes information for both adolescents and their families. Here you can read some Transition Stories from other young adults and a range of 16 Factsheets on relevant topics.

The Factsheets include: • Adolescent Transition: The basics for young people • Adolescent Transition: The basics for parents and carers • Resources for young people • ID, health cards & other practical matters • Finding your own GP • Resources for parents and carers • How to talk to your doctor • Differences in care Please remember: When young adults are moving from their Paediatric Cardiologist at the Royal Children’s Hospital to their New Cardiologist at an Adult Health Service, they are not considered transferred until they have had their first ‘adult’ appointment and a new medical record has been commenced. Therefore any Cardiology patient who has an urgent health issue during this Transfer period, regardless of the complaint, should present back to RCH. Written by Bronwyn Norman Pulmonary Hypertension Liaison Nurse Cardiology The Royal Childrens Hospital

HeartKids Bursary 2012 In 2011 HeartKids Victoria introduced a bursary to be awarded to a member of the medical staff to further their skills and/or knowledge of the latest techniques in advancing the care of children suffering from heart disease. The successful applicant for 2012 is Dr Darren Hutchinson of The Royal Children’s Hospital. The bursary was awarded to aid Dr Hutchinson in funding his upcoming Clinical and Research Fellowship in Fetal Cardiology at the Stollery Children’s Hospital, The University of Alberta, Canada, from July 2012 to June 2013 where he has been accepted as a Clinical and Research Fellow. He will receive training under the guidance of Professor Lisa Hornberger who is a world leader in Fetal Cardiology.

Fetal Cardiology is an important and growing sub specialty area of Paediatric Cardiology. It involves the prenatal diagnosis, counselling and management of Congenital Heart Defects and rhythm disturbances diagnosed as early as 10 weeks gestation. Dr Hutchinson’s aim is to bring the breadth of skills and experiences he gains through his time at The University of Alberta back to Victoria with the intention of establishing a world class Fetal Cardiology Unit at The Royal Children’s Hospital within the next 5 to 10 years.

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Branch News

Congratulations!   .

 

Congratulations and our very best wishes to all these

New Babies

 families who have welcomed new babies in recent months.

  Antony and Nadia Drapos have welcomed another beautiful little daughter Milla Rose, born 23rd December 2011.  Milla, who is a baby sister for HK Zara, also is a heart child.  Caitlin & Xavier would like to announce the safe arrival of   HK Eli Maddern-Andrews on 28 December 2011.  Tim & Anne Harper have announced the arrival of  another son, HK Josiah, born on 9th January. He is a  new little brother to HK Michael, James and Jocelyn.   Andrew & Wendy McQuie announced that their new  baby boy arrived on 11th January. HK Jacob is a little  brother to Olivia & Nathan.  Daniel & Holley Torney have announced the addition of   their son HK Mason to their family. He arrived on 4th  March and is a baby brother for Savannah.  Adam and Pennee Bronstein have announced the arrival   of their third child Samuel John who was born on March 15th. Samuel is a brother for Elli and HK James.   Dean and Sam Jackson would like to announce the arrival of a very special heartkid, Zarliya Audrey, who arrived   earlier than expected at 35 weeks on 20th March 2012.  She is a sister to Kiarra, Jamayka and Jaspa.  Britney & Nanny Carolyn would like to announce the safe  arrival of HK Marcus Coss on 28 March 2012.   Salvatore & Sheridan del Popolo have welcomed the  arrival of their daughter, HK Winter, on 4th April 2012.   Ian & Karen Howard have announced the arrival of their  son, HK Logan. He was born on 14th April.  Matthew Simpson & Sara Stark have announced the safe   arrival of their baby boy, HK Noah, born on 16th April. Damian & Danielle Hooker have welcomed their baby   HK River to their family on 2nd May. She is a little sister  to Zane, Ruwan, Maleisha and Jordan.  Gabriele & Tanya Ricevuto are pleased to announce the   arrival of their daughter HK Vienna Antonietta on 3rd May. The Yates/Cubitt family have announced the addition to   their family of a daughter HK Lily on 16th May. She is a  baby sister to Zachary.  Adele, Simon and HK Christian Luca have announced the   early arrival of their daughter and sister Lina Evelyn on  25th May 2012.  In each edition of the newsletter we like to welcome any  new babies who were born in the last three months.  If you have a new addition to your family (heart child or   sibling) and would like the baby’s birth announced in the  newsletter, please send us the details.       

HeartKids has a number of Branche s around Victoria and Tasmania. You are welcome to con tact your local Branch Coordinator to introduce yourself, so the Coordinator can keep you informed about activitie s in your area. Please see contact details on the back page of this newsletter and watch the branch news on our web site: www.heartkidsvic.org.au Select Members/Events/Branch Network-Coffee Mornings or follo w us on Facebook for event dates. Bundoora group Our new Bundoora Branch is up and running, having held their first coffee morning in May. The y are meeting on the first Tuesday of each month. Wantirna group Amanda is retiring from her role as joint Co-ordinator for the Wantirna group. We are very grat eful for the time she put into organising the coffee mor nings and would like to thank her. We are thankful that Jan ita will continue in the role of Coordinator.

Easter Activities

In Geelong (above) there was an Easter Egg Hunt plus craft & games in the park and at Bendigo (right) the kids decorated the bags for their Easter Egg Hunt

Happy Birthday!

A very ‘Happy Birthda y’ to all the heart children and their fam ily members celebrating birthdays during Winter! 12

Morning Tea on a beautiful day in Launceston with an Easter Egg Hunt for the kids


News from Tasmania Tasmanian Special Children’s Christmas Party Date & Time: Sunday 25th November 2012 starting at 11am. Venue: Silverdome, Launceston Address: 55 Oakden Road, Prospect, Tasmania 6393 6240 if you To Register: Please contact Kylie on kylie.smith@heartkids.org.au or would like to register your heart child to attend.

8th Tassie Muscle & Classic Car Cruise

HeartKids Morning Tea Date: Thursday 23rd August Time: 10.30am Venue: The Punchbowl Reserve, Punchbowl, Launceston

9th Tassie Muscle and Classic Car Cruise Date: Sunday 9th December

3rd HeartKids Car & Bike Show

On May 27th about 500 cars made their way from Launceston to Longford for the 8th Tassie Muscle and Classic Car Cruise, presented by Aussiecoupes. net. Once at Longford there was a sausage sizzle, face painting and a prize draw. Fancy faces and Airbrush ink kindly donated their time. Our sincere thanks to the volunteers who manned the BBQ for 5 hours - thank you so much Verity, Kat, Mary, Bianca and Casey. Aussiecoupes.net raised around $1000 for HeartKids.

Aussiecoupes.net will proudly present the 3rd HeartKids Car & Bike Show on Sunday, 24 February 2013 at Josef Chromy Wines 370 Relbia Rd, Launceston, Tasmania. Could stall holders and anyone who can offer a raffle donation item please contact Kylie: xbfan@bigpond.com

Crusty’s Bakery/HeartKids Challenge Bike Ride It was a perfect day on Sunday 18th March for the Crustys Bakery/HeartKids Challenge bike ride. Forty-five riders completed a choice of 50 or 100km rides around the North West Coast of

Tasmania, both routes hilly and very tough! A total of $920 was raised thanks to a number of generous sponsors providing merchandise for random draws, refreshments and help on the day.

Some of the participa nts in the bike ride and still smiling after 100k!

Our thanks to Betta Milk, Coca Cola, Derrico Cycles, Leicester Cycles, Mick’s Fruit and Veg, Crustys Bakeries, and Treadleytech mobile bicycle repairs.

HK Bella and dad, Darryn

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James Bronstein’s Story It was my second pregnancy and although Adam and I didn’t find out the baby’s gender, we had strongly decided it was a boy. I had a normal pregnancy, but was so tired! I put this down to the fact that I had a young toddler already as there’s only about a 15 month age gap between them. After much debate about the method of delivery, a second Caesarean section was decided upon due to the small age gap. The day came, and ‘Bug-a-Lugs’ was evicted. Born at about 38 weeks, James was a boy! 7lbs 8 oz, long and thin... nothing like his 9lbs 4oz sister. He was immediately nicknamed ‘Critter’. We were so excited as we then had one of each. The first day went by in a blur. James was given the ‘all clear’ and we were left in our room all happy and extremely tired... looking forward to a sleep. On Day 3, I noticed James was looking a little yellow. Just a slight tinge. Still, I mentioned it to the nurses, and they did a test for jaundice. His results came back a little high, but not high enough for the UV light therapy. I was sent home on Day 4 - happy to be going home, but still a little worried about the jaundice that didn’t seem to be clearing up. James was feeding well though, and putting on weight, so I wasn’t too worried. On Day 6 the nurse came out to our home. James was even more jaundiced, but I was told to just put him out in the sun and that would clear it up. She was planning to be back in a couple of days. The weight gain was going well, as was feeding, so we were not too worried. On Day 8 the nurse came back. I once again mentioned the jaundice and was told to put him out in the sunshine, so that it would clear itself up. I said that I’d had him out there for most of the previous days (within reason) and he was still the same. Once again, he was feeding well, and putting on weight and the nurse said everything seemed fine and that he was ‘only a little yellow’. By the evening of day 9, I’d been struggling all day to feed him. I put it down to ‘baby blues’, and me just being paranoid. He WAS feeding, just not well. I kept telling myself he’s fine, he’ll be alright, and even in tears, I was convinced it was all in my head. Midnight came and I’d been trying to feed him for over an hour. I gave up, put him to bed and kissed him goodnight. Three hours later, I woke and once again attempted to feed him, but he still didn’t feed. He’d turned a funny green colour. I convinced myself it was once again, all in my head and that, it

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must be the lighting or something. I woke to him crying four hours later and then he actually did feed. This convinced me that the previous night’s concerns really were just all in my head. His colour had returned to the shade of yellow it had been. He fed okay, but not great. At 8am the local Doctor’s clinic opened so I rang and made an appointment. At 12 noon, I managed to get him to feed, but again not well. At 3pm, we saw a GP (not my usual doctor). He said he was fine. I pointed out that he’d barely fed and was only just over a week old. He stated that he looked a little dehydrated, but not to worry, he’ll feed when he has to, that he just needs to get hungry enough. My husband and I left, dropped our daughter off with her grandparents and drove straight to the emergency department of the local hospital. I didn’t agree with the doctor and was sick of no-one being worried about his jaundice. We arrived at the hospital at 4.30pm. As our luck goes, it was a day of a plane crash and the Emergency Department (ED) staff were rushed off their feet. Finally, at around 9pm, we were admitted to the ED. We were put in an aisle with James in a hospital crib. There was barely a chair to be found to sit on, and James hadn’t fed since midday. I needed to express, as I just kept getting more and more full. The Paediatric Registrar had been paged, but was held up. They tried getting an oxygen reading on James but ‘he was too small for the probe’ so they moved us to a bed to see if they could get a better reading there. They kept trying on his toes, first one foot, then the other. Then we were left alone for a while as they had found a breast pump for me to express with. They were still waiting for the registrar and around midnight she finally arrived. After apologising for taking so long, as there was another serious case on the paediatric ward, she set to work on our little man. She too couldn’t find a reading. But instead of just fobbing it off, she thought there might be something to it. We were soon transferred to the Resuscitation Room, via x-ray. She basically said that the x-ray was too blurry to see, but could see he was weak and that was why he wasn’t feeding. She asked if she could do a lumbar puncture, as she suspected meningitis. I agreed to anything necessary. I wanted my little boy better. She soon changed her mind, or rather, she skipped that step. She stated he was in too serious a condition and that she was just going to treat him as if he did have meningitis.

The next few hours went by in a blur. Hubby and I had many unanswered questions. The doctors were in work mode, and quite often, we were left out of the loop. We were sent out of the room on many occasions so they could add tubes/

Photos of James with his family: above, in ICU and below, in the Cardiac Ward


wires. At one stage, I attempted to feed him. In my mind, all I could think was ‘he’s here because he’s not feeding; maybe if I can get him to feed, he’ll improve’. I was jumped at from all corners... ‘NOOO you can’t do that!’ ‘Okay, well, no one told me I couldn’t.’ It had something to do with the medication they were pumping into him - ‘just in case’ - it won’t respond or work if he has something to eat/drink. Somewhere in the background, a male nurse was singing lullabies to James.... one special thing I remember to this day. We were once again sent out, so they could insert needles and put a dome over his head for oxygen. It was finally stated that if the medication they were pumping into him didn’t work, then it was his heart that was the problem. They told us they’d called the Royal Children’s Hospital (RCH) and they had sent a team, which would be there in an hour or so, coming via ambulance. We were allowed in to see James, but short of holding his little hand, there wasn’t much we could do. Between bursts of tears from my hubby, me AND James, we were once again sent out so they could ‘get him ready’. Next thing we overheard the Paediatric Registrar telling another doctor she’d called the ambulance, and they were coming with lights and sirens and would be there in 10 minutes. When they arrived 10 minutes later, the head doctor from the RCH came and spoke to us almost straight away, and confirmed it was his heart that was the problem. They explained that they were putting James into the NETS ambulance, and it will look pretty full on, but at least we could know now that he was being well cared for. It DID look pretty full on.... tubes and lines running here, there and everywhere! We were told to go home (it was almost 5:30am by this stage), have a rest, and head into the Children’s Hospital in a few hours. By then James would be in ICU, all set up, they would’ve run the tests they needed and would know for sure what’s actually going on. Defeated and tired, we agreed. On our way out, we thanked the Paediatric Registrar for all her help.

We drove home in a blur, rang our best friends to let them know what was happening, and to arrange a lift into the hospital (figuring we wouldn’t be able to drive on just a couple of hours sleep). Hubby slept for two hours while I packed a bag and expressed again. Adrenalin is a funny thing... it sure seemed to be the only thing keeping me going! Luckily, at the time my mother-in-law was living with us, so she agreed to continue looking after Elli, our daughter. When we got back to the hospital and saw our little boy, the cardiologist was paged. He sat us down and explained what was going on. He gave us the diagnosis - James had a VSD and a co-arctation of the Aorta. Both would require surgery, and depending on the surgeon, it could be done in one big operation or two separate ones. The waiting game began, while they kept him stable in ICU. He had the surgery the next day, and the surgeon did both procedures in one big operation. All I can say is that God must have been guiding his hands. James recovered very well. We were allowed home at 4pm on Christmas Eve.... what a great Christmas present! With the appointments at the RCH getting further and further apart, it’s easy to forget some days how tough those first few weeks were.... We are taking each step as it comes. I’m astounded, as is James’ regular local GP, that there’s hardly any evidence that there was ever a problem with James. James is now 4 years old. He’s very tall and very active for his age. He loves singing and dancing and is enjoying life. Other than the tell-tale scar (which he calls his ‘number 1’), there is no evidence of the surgery. The VSD hole is closed, and the co-arctation hasn’t returned. James started kinder in January and is enjoying this next step in his life. He is very happy in his new role of being a big brother to baby Samuel. So, that’s our story.... a little different from some others, but similar in some ways. Written by Pennee Bronstein, James’ mum

Above: James recovering from surgery; ‘Welcome Home’ cuddles on Christmas morning with big sister Elli and Mum; Baby James, aged 3 months Below: James now 4 years old, enjoying life and holding his new baby brother Samuel

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HeartKids Australia News I am delighted to write my first contribution to your newsletter as CEO of HeartKids Australia, a role which I commenced in March. I am not a heartkid parent but my experience as a registered nurse and Director of Nursing of a children’s hospital has provided me with an understanding of the challenges faced by heart children and their families. I have also had previous experience as a Not-for-Profit CEO. I am very excited about my new role and I look forward to working with the HeartKids team to improve the lives of children affected by heart disease, and their families, through support, awareness, advocacy and research. My first two months have been both busy and interesting. In April, I was at the Mater Children’s Hospital, Brisbane where The Hon. Mr Kevin Rudd MP, launched a new video message, which he fronted, to raise awareness of Childhood Heart Disease (CHD), and to promote support for HeartKids Australia. In the video, Mr Rudd tells of how he got “pretty sick” after acquiring rheumatic fever as a child, something that has become part of his life ever since. In encouraging everyone to “get behind the HeartKids charity”, Mr Rudd reflects on the confronting fact that six Australian babies born each day already have heart disease. Mr Rudd’s openness about his own heart disease experience delivers a very important message to all of the Australian children under the age of 18 living with heart disease, and, their families. That message is one of hope. Life with Childhood Heart Disease is challenging, and, sadly, some children do not survive. However, Mr Rudd, Australia’s highest profile ‘heart kid’, is proof that a near normal and successful life can be possible, and that heart children can go on to do great things. We are deeply grateful to Mr Rudd for his warm-hearted support, his personal encouragement, and the generous giving of his time, both to make and launch the video. We are also grateful to the Brisbane Mater Children’s Hospital for hosting the launch, and HeartKids Queensland for initially reaching out to Mr Rudd. The message is currently being distributed to television stations around the country for airing as a Community Service Announcement. I attended the inaugural “HeartKids Cup” at the Sydney Cricket Ground. I congratulate Terry Hopkins, for his initiative and

HKA CEO Jann Kingston, HKA Chairman Brian Pereira, Kevin Rudd and HKQ State Manager Anne Bannister

hard work in making it happen, and, your ambassador, and AFL legend, Glenn Archer for his contribution. I would also like to acknowledge the role of HK NSW and everyone at the Sydney Swans, especially Jarrad McVeigh. It was a great day for HeartKids – even if it was not the final score that you were hoping for. I look forward to next year’s “HeartKids Cup” in Melbourne! I am pleased to say that I recently had a short visit to the new Royal Children’s Hospital where I was able to meet Dr Michael Cheung, Director of Cardiology and HK Victoria Support Manager, Tracy Stanley, before having a look around Koala ward and the Specialist Clinics, including a visit to the meerkats! What a wonderful facility for sick children and their families. I have also visited HK South Australia and was able to attend their Tiny Tickers Ball with a number of our HKA Board Members. A very enjoyable night was had by all! In closing, I would like to thank everyone for their warm welcome to this wonderful organisation. Kind Regards, Jann Jann Kingston CEO, HeartKids Australia

New Merchandise New Kids T-shirts with HeartKids logo $15

Available in sizes: 16, 14, 12, 10, 6, 4, 2, 0

HeartKids Keyring $5

Our HeartKids key ring features a red spinning heart with the HeartKids logo framed by a silver heart (approx 3cm high).

HeartKids Umbrellas $30

Our HeartKids umbrella is a large black golf umbrella featuring the HeartKids logo. Perfect for our unpredictable weather!

To order merchandise please contact Amy Emmett by phone: (03) 9329 0446 or 0411 552 264 or email: amy.emmett@heartkids.org.au 16


Reflections Heart Angel

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

Birth Dates

Shaun Wilson-Miller 23 January 1995 - 26 May 2012 ‘Live life to the fullest because you never know what’s going to happen’ Our beautiful boy Shaun Forever Young

Zach Beadel 5th June 2010 Thomas Jones 13th June 2008 Dylan Grilli 15th June 1993 William Fisher 19th June 1999 Emily Cole 30th June 1987 Oscar Batrouney 1st July 2009 Cohen Lewis 7th July 2007 Zac Moore 13th July 2008 Charli Hartley 20th July 2009 Margy Kyberd 22nd July 1967 Matilda Annie Farley 27th July 2011 Paige Berry 9th August 1995 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 Alexander McGrory 1st July 2000 Cohen Lewis 10th July 2007 Raphaela Perrin 10th July 2010 Paul Livingstone 19th July 1992 Kristen Potts 23rd July 2007

Remembering.... Go ahead and mention my Child, The one that died you know. her. Don’t worry about hurting me furt w. The depth of my pain doesn’t sho Don’t worry about making me cry. I’m already crying inside. Help me to heal by releasing the tears that I try to hide. I’m hurt when you just keep silent pretending he didn’t exist. I’d rather you mention my Child knowing that he has been missed. You asked me how I was doing, I say “pretty good” or “fine” . but healing is something ongoing I feel it will take a lifetime.

Zac Moore 25th July 2008 Matilda Annie Farley 27th July 2011 Charli Hartley 28th July 2009 Erinn O’Brien 14th August 2005 Margy Kyberd 15th August 2009 Thomas Jones 19th August 2011 William Fisher 23rd August 2003 Emily Cole 26th August 2006 Benjamin La Motta 31st August 2009

Thinking of You

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

- Author Unknown

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Recent Events

Shepparton picnic

Evelyn, Thanks to the efforts of our Shepparton Coordinators, Cheryl and great a to treated were and the Kiwanis Clubs in Division 7, our families you day out at Emerald Park in Shepparton on Sunday 25th March. As s activitie of variety a enjoyed families can see from the photos above, bikes, water crafts, karts, go castle, g jumpin g, including rock climbin farm animals and were also treated to a lovely barbecue lunch.

Run for the Kids

2012 Herald Runners, joggers and walkers in the a record d raise Kids the for Sun/City Link Run Friday d Goo the for on milli 5 amount of $1.6 The Royal Appeal. HeartKids joined forces with , with our ices Children’s Hospital Cardiology Serv r fifty ove ng havi team “RCH/HK Little Tickers” participants.

Good Friday Appealrecord total of

da The 2012 Good Friday Appeal raise ren featured in child rt hea $15,820,640.78. Many of our telethon telecast. the on ents segm newspaper articles and Easter Bunny, Channel 7 RCH in-patients were visited by the The Good Friday Appeal celebrities, sports stars and singers. was a feature again with Kids Big Day Out at Etihad Stadium to enjoy. something for every family member

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Run for the Kids participants sporting our HeartKids logo

Ra zz am at az z

Families enjoyed an exciting sho w at Festival Hall on Saturday 12th May . Here’s Noah Hartney pictured with ‘Justin Case’, a comedy acrobatic cyclist. Many thanks to the Immune Defi ciency Foundation of Australia for offering free tickets to our members.


Making A Difference t day 13 May at ‘Carn the Kids’ Fun DatheytheOu Carn the Kids Fun Day Out on Sun excitement of AFL Football at the

yed Thirty-six HeartKids attendees enjo rne v Western Bulldogs match. bou Mel Etihad Stadium for the North marquee to receive Families met at the Carn the Kids yed special guest enjo and their tickets, meal vouchers bourne players Mel th Nor the of appearances from some for autographs and photos. relations program that Carn the Kids is a community otherwise have the not aims to give children who may out. Thank you day fun a y opportunity, a chance to enjo tball Club for Foo rne bou Mel th to LeasePlan and Nor nt. including us in this wonderful eve

Pictured here is Nate Kreeck who played Auskick at half time and throughly enjoyed the day

William (right) and Samuel Arrowsmith had a really great time at their first AFL match

Donation of iPads

a leader in technology Distribution Central Pty Limited, , has donated iPads to distribution and channel services ering from heart disease, HeartKids Victoria for children suff pital. based at The Royal Children’s Hos spend long periods of time The iPads are used by children who tion to their school work and in hospital to maintain their connec impact of their disease. thereby help reduce the negative ds, I’d like to thank “On behalf of everyone at HeartKi n of the iPads and generosity atio don its Distribution Central for said HeartKids Victoria CEO, in supporting our organisation,” Terry Hopkins. r, found that this type of “Tracy Stanley, our Support Manage for the kids in helping them technology can drive real benefit work, which is very important keep up to date with their school y negative, consequential in trying to shield them from as man e,” said Mr Hopkins. impacts of their disease as possibl

education session using the RCH patient Nicholas doing an r Mikaela and his mother and siste iPads with Koala ward teacher

Distribution Central, Scott Frew, Executive Chairman, son, Lachie with Lois O’Callaghan and her

to give back to our “At DC, we believe it’s important s such as HeartKids is community and supporting charitie , Executive Chairman of one such example,” said Scott Frew Distribution Central. er, Director at Southern HeartKids Board Member Chris Palm ly reached out to Cross Computer Systems, original HeartKids. Distribution Central on behalf of t of HeartKids first hand. Chris has experienced the suppor a heart condition and he “My youngest son was born with Royal Children’s Hospital. spent his first 21 days of life in The is still with us and very he We are one of the lucky ones as healthy,” said Chris.

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Acknowledging.... Locky’s Poker Run 2012

Locky’s Poker Run, held in March, was a fundraiser for HeartKids. The 107 participants with 56 bikes, one Red Corvette and two mini buses, joined in the mystery ride, the fundraising auction and raffles and were entertained by a local band ‘Uprising’. The success of the day was due to the generous community support, as seen on the T-shirts. Our thanks to all involved and a special mention of Mansfield Mt Buller Buslines for their support on the day.

HK James Harbour, the mascot for the Ride

is er St am pi n’ Up Fu ndor,ra Libby Gibson,

inat HeartKids Geelong Branch Co-ord Up Fundraiser in pin’ Stam a at ak spe to ed was invit Stampin’ Up, Donna for April. The local demonstrators raising day with fund the Elliot and Nerida Potter, held . oria Vict ds rtKi proceeds going to Hea ladies present, not Thanks to their efforts, the twenty they raised $264 but only enjoyed their scrapbooking, games. Thanks! and s tion on the day through silent auc

HK Ellie, Libby Gibson and her daughter, pin’ Up Stam with Donna and Nerida from

Easter Hamper Raffle

HeartKids member Amy D’Couto, mother of HK Henry, arranged for an Easter hamper to be raffled at her workplace. Thanks to the Qantas Melbourne Check-In Staff for supporting this fundraiser.

Awesome sight - all the Bikes in front of the Moyhu Hotel

Grandchild of the Year

Heart child Scott Hawkins recently won the Australian NaturalCare Products “Grandchild of the Year” competition. His proud grandmother entered this gorgeous photo of Scott. Australian NaturalCare Products were deeply touched by Scott’s story and made a generous $500 donation to HeartKids Victoria. Congratulations Scott and thank you Australian Natural Care Products!

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Amy is pictured (right) with work colleagues Mich (left) and Shawan, who won the hamper.


....Special Efforts! Anzac Day Footy Game

The Essendon and Diamond Valley Superules teams played a special game on Anzac Day this year mirroring both the Anzac day clash between Essendon and Collingwood, whose colours they wear, and the HeartKids Cup played on the previous Sunday between North Melbourne and the Sydney Swans.

Country Women’s Association

In May 2011 our CEO, Terry Hopkins, attended the 83rd Annual State Conference of the Country Women’s Association of Victoria where it was announced that HeartKids Victoria had been chosen as the recipient of the CWA’s Thanksg iving Fund for 2011. During the year our Support Manager, Tracy and other members of HeartKids addressed a number of the Branch meetings to inform the CWA members about HeartKids and what we do. Terry was invited back to the 84th Annual State Conference at Swan Hill on 30th May this year to accept the proceeds, a cheque for $22,775. This was a fantastic effort by the members of the CWA and one for which all of us at HeartKi ds are truly grateful. In thanking the assembled members Terry advised that the money would be used to help fund our support activities. He explained how the funds are used to help regional families by describing a possible scenario where a family from Swan Hill might have to attend the RCH and how, throughout the trials and tribulations they may face, we could apply the funds to help them.

The game was the season opener for both clubs and was played in very trying conditions with rain falling for most of the day. Essendon ran out winners in the end and Diamond Valley President Chris Richardson presented the perpetual trophy to Essendon Coach, Ashley Koenig, and captain, Andrew Brebner. The trophy was particularly special as it was built incorporating the World War II Australian army hat badge from Chris’s grandfather’s hat.

Above: CWA State President, Carol Clay presenting their cheque to HeartKids CEO, Terry Hopkins Left: Terry Hopkins pictured addressing the attendees at the CWA Annual State Conference

Bu nn in gs War eh ou se So ut h O ak le ig h Co m m un ity Fu n D ay HeartKids had a stall selling merchan dise and raising awareness at the Bunning s Warehouse South Oakleigh Commun ity Fun day on Saturday 28 April 2012. The event was a fun, family day for the entire community and included entertainment, face painting, rides, children’s activities, and community displays.

We would like to thank our voluntee rs for manning the stall and a special than k you to Bunnings Warehouse South Oakleigh for inviting us to participate and for thei r generous donation of $500.

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Thank you for your recent gifts... Joyce Anderson AutoOne Badgelink Bardot Junior Jan Baynes Leanne & Graeme Baynes Betty Berkery Bike Week Charity Challenge Fundraiser Boon Roses Wayne Bowden Caroline L Buckley Buninyong Primary School Bunnings Warehouse South Oakleigh Butterflies & Roses - Cakes by Peta Cake Envy Tracey Campbell Candy Soirees Carlo Digi and Melanie Domerico Shae Cater Centro Karingal Chris Gibson Memorial Donations Victor Cilia Peter Collett Julie-anne Compston Conrad D’Cunha, Kia Motors Australia C M Cook Marie Cook Shane Cook Cranbourne Day Care & Kindergarten Centre Mrs Bev Crawley Angelo Dal Santo Giovanna Dal Santo Sandra Dal Santo Maria D’ambra Daniel Reddie Foundation Amy D’couto Nick Dell, Dell Property Advisors Virginia Devlin Frances Duffy

Gen Durraw eegenda Wendy Exon Mrs Eileen Farley Kevin & Beryl Featherston Fitness First - Bayside Fly Baby Elizabeth Gibson Gift in memory of Emily Cook Gift in memory of Matilda Harrison Gift in memory of Asha McNamara Good Shepherd Lutheran Primary School Goulburn Valley HeartKids Branch Grote Reber Foundation Maria Gruber Ashish Gupta H J Heinz Co Silvana Halamandaris HiddenCove Val Hopkins Brett and Kylie Hopson Leonie Hurford Immune Deficiency Foundation of Aust. Cathryn Irvine Tanya Jhoomun Knox Tavern Lions Club of Box Hill Little Big Company Little Party Wishes Little Tinkers Lucia Dal Santo’s 1st Birthday gifts John Marasco Jo Martin Matilda Harrison Anniversary Donation Frank Merange MMG Australia Tony Mount Mr & Mrs Grubb Stephen & Taryn Nelson

Mother’s Day Morning Tea at St Therese’s School

Nilma Primary School Ocean Grove Neighbourhood Centre Keith Owen Vanessa Page Paige Berry Memorial Donations Colin Parrott R & R Perkins William Porter Natasha Prentice David & Sonya Pryce Praveen Rajeswaran Rhonda Rattray RCS Electrical Services Pty Ltd Kelly Richardson Ringwood Secondary College Rolando Family Simpson Football Netball Club Brian & Luby Smith Southern Cross Computer Systems St Aloysius College St Catherine’s School Stampin’ Up, Geelong Star Fitness Strategem Financial Group Sweet Treasures by Vanessa Peter & Joyce Tang Mark Terrill The Cake Angels The Rotary Club of Highton Fr. Donald Thomas Jacinta & Dave Thurston Tisher Liner & Co Lawyers Lorraine Van Der Meer Warrnambool City Council Nicole Watson Jenna Wittick Frances Xiberras Z Couriers Yingchen Zhang

at St Therese’s School A Mother’s Day Morning Tea was held in the Performing Arts Centre in Essendon on Friday 11th May. d of mothers, grandmothers The large crowd of women who attended the morning tea consiste ’s. They were treated to a Therese St of s and other significant females in the lives of the student hes. sandwic ribbon and ns macaro , delicious assortment of food including cannoli Although not the focus, it was decided that Heartkids Victoria would be the charity that the women were invited to donate to while indulging at the morning tea. Some factual information was shared with the crowd and a total of $250 was raised. ‘We can all appreciate what a wonderful job Heartkids Victoria does for the children and families affected by congenital heart disease. Keep up the good work Heartkids!’ Our thanks to Lanelle Eid for writing this article.

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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 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

p Becoming a Member (Membership is free)

p Becoming a Volunteer

pP  articipating in fundraising & awareness

p Business sponsorship

pM  aking a regular gift through my bank

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

p Leaving a gift in my will

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

Please complete this form & post to: HeartKids Victoria PO Box 803, Parkville 3052 Donations of $2 and over are tax deductible

Please automatically debit my credit card: Amount $.................................

p Monthly p Quarterly p Yearly I hereby authorise HeartKids to deduct these funds from the credit card detailed on this form until further notice.

Mr/Mrs/Ms: (First Name) .............................. (Last name)........................................................

Phone: ................................ Email: .................................................................. Heart 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 Supporters National:

State:

23


 

 

Diary Dates

r Kids n Melbourne fo

- Ru  Saturday 14 July elbourne M n Ru ly Ju Sunday 15 HeartKids  ber - Cuppa for  August & Septem us st - Circus Quirk Sunday 26 Augu ptember  3 -2  Weekend Friday to Sunday 21 Se ville rm Camp, Heales  - Candlebark Fa p Getaway m Ca  er ob ct O Weekend 12-14 Trains  er - Box Hill Little  Saturday 13 Octob ral Meeting ber - Annual Gene  Thursday 25 Octo y  Sunday 11 November - Myuna Farm Da light 2012  November - FunF  Sunday 11 ildren’s Ch l ia ec Sp r Sun 25 Novembe smania  , Launceston, Ta Christmas Party  rty Pa as tm - Geelong Chris Sat 1 December rty   t 8 December - Melbourne Christmas Pa Sa e or  events check insid  For more about these ic.org.au tkidsv go to www.hear 

MELBOURNE METRO BRANCHES Bayside HeartKids Messagebank (03) 9513 9030 lynette.mccoullough@ heartkids.org.au 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 Mornington Peninsula Irene Day (03) 5979 4918 0413 299 209 ieday@optusnet.com.au Pakenham Joanne Arrowsmith (03) 5967 7083 joarrow@bigpond.net.au

HeartKids Victoria

VICTORIA

CONTACT US ARN: A0021470B PO Box 803 ABN: 16 336 986 918 Parkville Victoria 3052 P: (03) 9329 0446 HeartKids is an Auxiliary of The Royal Children’s Hospital, F: (03) 9329 0446 Melbourne, Australia E: heartkids@heartkids.org.au Facebook: HeartKids Victoria (including Tasmania) VISIT US Suite 310 / 55 Flemington Road North Melbourne 3051

www.heartkidsvic.org.au

Contact Details REGIONAL BRANCHES VIC Albury/Wodonga April Schubert (02) 6056 6448 0407 551 967 april_peter@internode.on.net

Stawell Leanne Amarant (03) 5358 2945 or 0419 864 412 leanneamarant@hotmail.com Wangaratta Karyn Howard 0412 988 285 karynh74@gmail.com

EBSTEIN’S ANOMALY Kathy Sims (03) 5831 1110 kjsrms@bigpond.com

OVER 18’s Erin Cervelli (03) 9513 9030 with hearts4heart - Support for Adults Bairnsdale Heart Disease Caroline Foard 0438 928 821 Tanya Hall 0426 240 636 gi m thag o.co Won yaho cfoardy@ info@hearts4heart.net.au 0429 325 643 hven Met Cath hearts4heart.net.au Ballarat @gmail.com et73 catm 3679 5332 (03) th Kea mi Nao KAWASAKI DISEASE 0408 559 535 Shirley Mates (03) 9894 1257 TASMANIA mysissa03@yahoo.com.au akfn@optusnet.com.au Burnie u Website: www.kdfoundation.org.a Bendigo Amanda Riley 0448 330 611 ast ME Natasha Prenderg KABUKI SYNDRO amanda.riley1@bigpond.com (03) 5441 8262 or 0421 590 169 Stacey McKiernan 1274 6433 (03) ne arla Gail McF goliathgroup@bigpond.com (03) 5275 1542 0488 033 789 stacey@sakks.org ma om Moa nd.c Echuca/ themcfarlane4@bigpo Website: www.sakks.org Tracey Hard Hobart 0438 962 056 HYPOPLASTIC LEFT HEART Paul Hyland (03) 6247 8435 .com ond bigp ve@ tracnste SYNDROME 0418 561 504 & SIMILAR CONDITIONS om nd.c igpo Geelong 1@b and l.hyl pau 2439 5250 (03) www.hearts-of-hope.org son Gib Libby Launceston Leanne Amarant (Victoria) 0411 057 905 Kylie Smith (03) 6393 6240 m o.co (03) 5358 2945 libway2000@yaho 0448 983 587 Leanneamarant@hotmail.com Horsham kylie.smith@heartkids.org.au Csaba Ovari (Tasmania) Gaynor Baker (03) 5384 2280 (03) 6229 8169 INTERSTATE mtbcarpentry@bigpond.com at: ils deta csaba.ovari@hearts-of-hope.org Contact y Valle obe Latr k Coo t Poin www.heartkids.org.au LONG QT SYNDROME (LQTS) Sophie Werner 0427 955 453 Audrey Cater Sherrie McDonald 0431 544 510 sophia.werner@bigpond.com SPECIAL INTEREST GROUPS (03) 9394 7965 u sherrie.mcdonald@heartkids.org.a 0420 500 905 Portland BEREAVED FAMILIES EMAIL or g.au www.sads.or audrey.cater@bigpond.com Kerry Sluggett (03) 5523 2503 SUPPORT www.sads.org.uk/ rg/ pe.o f-ho 0418 312 320 http://www.hearts-o Tullamarine T. CARDIOMYOPATHY ASSN of AUS ksluggett@iinet.net.au support/bereavment/intro.htm Lynette McCoullough www.cmaa.org.au/ site: Web (03) 9333 1586 Goulburn Valley HEART TRANSPLANTS MUSLIM FAMILIES gh@ llou er ccou and lynette.m Cheryl Alex Belinda Holden 0400 714 182 Lucy (Fatima) Hussain heartkids.org.au (03) 5825 4005 PACEMAKERS 0430 738 820 .com chezalex70@bigpond Wantirna Mandy Tichelaar (03) 9728-6984 MULTIPLE BIRTHS Janita Felici South Gippsland 22q11 il Schubert (02) 6056 6448 Apr 5531 5182 0422 976 024 Kerrie Disney (03) Audrey Cater (03) 9394 7965 0407 551 967 janitafelici@gmail.com 0409 950 608 0420 500 905 april_peter@internode.on.net urme2@tpg.com.au audrey.cater@bigpond.com

2012 Winter HeartKids Victoria-Tasmania Magazine  

Magazine for families and friends of HeartKids Victoria-Tasmania

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