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VICTORIA Summer 2011-2012

Quarterly Newsletter for Victoria and Tasmania

Volume 21 Issue 4

* Awareness Month in February * Celebrating 2011 * New RCH now open

support

awareness

research

advocacy


Matters of the Heart Chief Executive Officer I hope you all had a great Christmas and new year. I know 2011 was a very fruitful year for all of us at HeartKids and I trust you all saw the results of some amazing efforts by the extended team. Thanks to the generosity of members, sponsors, volunteers and supporters we were able help thousands of children and families throughout the year as well as donate over $250,000 in equipment and education to the Royal Children’s Hospital to help improve the care of our heart children. Our various Christmas parties were again very popular and well attended, despite our inability to control the weather for the Melbourne Zoo party. We saw some great events and fundraisers run by members and sponsors alike in the last quarter, many of which are featured in this edition. I would like to make a special mention of our friends at Kiwanis. This year was the 12th consecutive year they have supported us at our Christmas Party and not only do they volunteer their time to help us but they continue to be one of our major fund raisers every year. The AGM was held in October and as a result of the postal elections we were pleased to welcome some new members onto our Board in Deborah Bowling, Toni Planinsek, Phil Riggio and Chris Palmer. On behalf of all at HeartKids I would like to pass on our heartfelt thanks to outgoing Board members Warren Larsen, Shane Larsen, Bill Ellerton and Kellie Scott for all their wonderful contributions during the year. Tracy and I were pleased to be invited to attend the opening of the new Royal Children’s Hospital as representatives of HeartKids and we have now moved our Support team into the new site. You can see Tracy and Sherrie proudly posing on Koala Ward on the front cover. We are expecting to have our presence at MonashHeart commence in February. In 2012 we will be even more active as we expand our support offerings to provide more in the way of support for our heart children, families and the hospitals. To do this successfully we need your help however. Firstly, you can help us to keep our member records up-to-date. We invite you to send details by email to heartkids@ heartkids.org.au or in writing to Reply Paid 803, Parkville 3052 providing us with updates or confirmation of the following: - your current contact details, including any email addresses you would like us to use to send information like our monthly Enews, -a  dvise if you would like to receive the newsletter electronically rather than receiving a printed copy, - t he two parent names for your heart child or heart angel that ought to be registered against your family membership for formal voting rights at the AGM and annual Board Member elections, -n  ame, gender and date of birth of any siblings of your heart child or heart angel, and -w  hether any of your children who are now over 18 would now like to take their own individual membership of HeartKids. Secondly, fundraising is a continuing challenge for us and the more people we have active in this area the better we are able to spread the load. You see many successful fundraising events featured in this newsletter and most are run by members and supporters just like you. They aren’t all large events, some are quite modest, but many small contributions soon add up to a significant amount. If you have any ideas please feel free to call or email me so we can try and assist. Also, corporate sponsorships are a great contributor for us, many businesses are looking for a worthy cause to support and we all know there is none more worthy than HeartKids so if you think you know of a business that would be a good sponsor let me know and l will work with you to make an approach. I hope you and your families are refreshed after the Christmas break and ready for a wonderful 2012. I look forward to meeting with as many members, volunteers and supporters as I can this year and improving even further the support we can offer to our heart children. Enjoy the newsletter. Terry Hopkins CEO, HeartKids Victoria

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Our Team HeartKids Victoria Board 2010-2011 * Chairperson: Gary Karatjas * Vice Chairperson: Natalie Palmer * Treasurer: Deborah Bowling * Secretary: Lauren Trengove * General Board Members: Karin Burgess Chris Palmer Toni Planinsek Phil Riggio

HeartKids Victoria Employees * State Manager/CEO 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/Newsletter Coordinator Margaret Patullo margaret.patullo@heartkids.org.au * Newsletter heartkids@heartkids.org.au

Front cover: Our Suppor t Manager Tracy Stanle y and Family Support Coordinator She rrie McDonald on the Koa la Ward at the new Royal Children’ s Hospital 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 newsletters. Thanks to Gordon Patullo for post processing of some digital images.

this newsletter is of the personal stories in Permission to reprint any er articles may be oth Any . rson irpe or the Cha required from the author oria. Vict ds rtKi Hea to ledgement reprinted with an acknow do not imply ter published in this newslet . Please note that articles s of HeartKids Victoria view rall ove ect refl not endorsement and may d stories represent nions expressed in chil each Also note that the opi l details are specific to dica me t tha and s nce d’s, chil r you personal experie to ilar sim ditions may appear case. Although the con more specific information ng uiri req s ent Par er. other details may diff ir child’s cardiologist. should check with the


Coming Events Tasmania Car & Bike Show - Sunday 5th February See page 4 for details.

Deniliquin Family Camp

Dates: Friday 9th-Sunday 11th March; RSVP 3rd February This is a free family camp, coordinated by the Kiwanis Club of Deniliquin, located at Four Post Camp, 567 Greaves Road, Deniliquin, which is 280 kms from Melbourne. Accommodation is camp style, single beds. All meals will be provided including dinner on Saturday night at the local RSL for the parents, while the children are minded by the Kiwanis members. To be considered, register your interest as soon as possible by booking on www.trybooking.com/BBNB. Please note that this event is for immediate family only - parents (or parent and partner), heart child, siblings of heart child or heart angel. Sorry but grandparents are not able to attend with the family unless there are special circumstances, so please discuss with Lynette. Enquiries please email lynette.mccoullough@ heartkids.org.au or telephone 9333 1586. Places are limited so priority will be given to member families who have not attended our family camps before.

In This Issue 2 Matters of the Heart 3-4 Coming Events 5 Eve’s Story 6 MonashHeart News 7 The New Royal Children’s Hospital 8-9 RCH News 10 Celebrations 11 New Babies; Starting School 12-13 Christmas Celebrations 14-15 Kiwanis Camp & Other Family Days 2 17 Reflections 18 Cuppa For HeartKids & Fun Events 19-22 Donations and Fundraising 23 Become Involved with HeartKids 24 Diary Dates

Daniel Reddie Fdn Charity Benefit - 23rd March Venue: The Pier, Cunningham Pier, Geelong, 6:30 - 11:30pm The Daniel Reddie Foundation is a not for profit Geelong-based organisation founded in September in memory of Daniel Reddie (Reverend Matchsticks) 29/3/1985 – 29/7/2011. While travelling through Europe he died of cardiac arrest and complications of an undiagnosed and undetected congenital heart defect. ‘The Daniel Reddie Charity Benefit – Reverend Reborn’ is a benefit night to commemorate his 27th Birthday whilst raising money for Heartkids Victoria and ‘Defib Your Club For Life’. www.everydayhero.com.au/the_daniel_reddie_foundation

Shepparton Family Picnic - Sunday 25th March

A free family picnic day at Shepparton sponsored by the Division 7 Kiwanis Clubs. All member families, friends and extended family welcome. Venue to be confirmed. To attend, please register by Friday 9th March with Cheryl Alexander on (03) 5825 4005 or emailing her on chezalex70@bigpond.com

Run for the Kids - Sunday 1st April

Entries open 1 February for this Fun Run which supports the Good Friday Appeal and the Royal Children’s Hospital

Good Friday Appeal - Friday 6th April Hoffy’s Challenge - Saturday 14th April

February is HeartKids Awareness Month We will be raising the profile of HeartKids through TV, radio, print media and running an awareness campaign on our Facebook page: www.facebook.com/HeartKidsVIC If you would like to share your family’s story please email a brief story and photo to heartkids@heartkids.org.au or post to PO Box 803, Parkville VIC 3052. Nationally, our major sponsor RFG have a number of events planned and “Capture a Heart” a photographic competition will be conducted on Facebook.

Coming Soon at Monash Beginning in February 2012, HeartKids will be holding a weekly afternoon tea on Wednesdays from 2pm-4pm to support families with cardiac children at MonashHeart, Monash Medical Centre, Clayton.

Ferntree Gully Hotel (1130 Burwood H’wy, Ferntree Gully) In memory of her niece, Stacey, who would have turned 18 this year, Julie Hoffman is aiming to raise a minimum of $18,000 for Heartkids. Her challenge is to do 1500 Burpees, the most challenging full body exercise. To read more and show your support, visit: http://www.everydayhero.com.au/hoffys_burpee_challenge

HeartKids Spectacular - Friday 25th May

Plan ahead and save the date! Join us at this 6th annual fundraising event, courtesy of the Northern Districts Combined Service Clubs.

Run Melbourne - Sunday 15th July

Entries are now open for The Age Run Melbourne 2012. www.runmelbourne.com.au

HeartKids Support staff Tracy Stanley (left) and Sherrie McDonald (right) with Associate Professor Sarah Hope, Head of Paediatric Cardiology Services, MonashHeart, Southern Health

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News from Tasmania HeartKids Tasmania Car & Bike Show - Sunday 5th February 2012

Venue: Josef Chromy Wines in Relbia, near Launceston Children are free. Time: Gates open at 9.30am for the general public. Entry: $5 for Adults, it’s on again! There will be entertainment for the whole family After the great success of the first Tassie Car and Bike Show in 2011, including a mechanical surfboard, mechanical bull, face such as craft stalls, food vans, live bands, loads of kids entertainment the lake and so much more. For the adults we have local beer and painting, jumping castle, Star Wars Storm Troopers, model boats on cars and bikes from all over Tasmania and the rest of Australia. wine and wood fired pizzas, not to mention some really, really nice to HeartKids. Enquiries to Kylie: kylie.smith@heartkids.org.au This event is being hosted by Aussiecoupes.net, with proceeds going e_Show http://www.everydayhero.com.au/HeartKids_Tasmania_Car_and_Bik

Recent Events

The 6th Tassie Muscle and Classic Car Cruise was held on Sunday 11th December. About 400 drivers met at the National Automobile Museum of Tasmania in Launceston before setting off for the Cruise to the Longford Village Green, where there was a BBQ, a jumping castle, games and face-painting. Each driver made a gold coin donation with all proceeds going to HeartKids.

Hawka raising awareness for HeartKids

ring at Angie voluntee f Day ol G y rit the Celeb

Special thanks to Kylie Hamilton Photography for these great photos of the Car Cruise

Kylie Smith and Angie Donohue both volunteered for HeartKids with the Tasmanian Police Charity Trust

Left: Indiana enjoyed having her face painted by Angie Donohue Right: Tyler, at the Special Children’s Christmas Party held in Hobart on 6th November

ther

O Heart Families Supporting Each

rne for surgery at the n heart children who travel to Melbou ania Tasm y man the of one is th Josh Smi pulmonary valve replaced. here after recent surgery to have his ured pict is He l. pita Hos ’s dren Chil Royal nceston Branch Josh’s mother Kylie Smith is the Lau a big thank you to say to like ld Coordinator and she wou role while they were in Angie Donohue for taking over that Melbourne. Pete and Carol Bosmans, Kylie also sends special thanks to a huge support to the with heart child Shanise, who were bourne. Smith family during their stay in Mel

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with his brother Ashley Josh recovering after surgery, and


Eve’s Story Tom and Anna Alexiadis were told there was a problem with their baby’s heart when Anna was 36 weeks pregnant. Eve was born with holes in her heart and a leaking heart valve and had surgery when she was two years old followed by another operation at five. Here’s Eve visiting a family in the Cardiac Ward on Christmas Eve 2011

She now has check-ups every year or so and is a happy, healthy 11 year old. Eve has just finished grade 6 and loves skiing, sewing, karate and playing with her younger sister Athena. She hopes to be a primary school teacher when she grows up. Eve and her family were inspired to give back and are wonderful supporters of HeartKids. They visit the cardiac ward every Christmas Eve to give out presents and spend time speaking with the children and families. The families in hospital love to see Eve doing so well after two heart surgeries.

Tom is a partner at Nelson Alexander Real Estate in Northcote. For a number of years his office has supported HeartKids through the Nelson Alexander Charitable Foundation by nominating HeartKids as the charity to benefit from their Foundation Day auction. Tom also ensures our HeartKids teddy bear sales keep ticking over by purchasing the bears to give to clients. HeartKids Victoria appreciates the ongoing support of Eve and her family.

Th an ks to N el so n Al ex an de r

Nel son Ale xan der ’s Fou nda tion Day auc tion s wer e held on Sat urd ay 27 Aug ust 201 1 rais ing an ama zing $13 0,30 6 – the ir hig hes t figu re yet! The big -he arte d age nts at Nel son Ale xan der Rea l Esta te, Nor thc ote auc tion ed a pro per ty at 14 Sha ftes bur y Par ade in Tho rnb ury with the full com mis sion of $8,1 68 don ate d to Hea rtKi ds Vict oria . We wou ld like to take this opp ortu nity to tha nk Nel son Ale xan der for the ir won der ful gen ero sity and ong oin g sup por t.

Christmas Hampers for Families in Hospital

The HeartKids Christmas hampers are distributed on Christmas Eve to families in the cardiac ward and ICU at the RCH. Thank you to our generous members/ supporters for donating items for the hampers.

Ev e Al ex iad is, rep res en te d he r Da d, To m Al ex iad is of Ne lso n Al ex an de r wh en pr es en tin g a ch eq ue to Te rry Ho pk ins to ge th er wi th Jo Xe rri , Ca rd iac Wa rd Cle rk at th e Ro ya l Ch ild ren ’s Ho sp ita l.

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MonashHeart News

One of the strengths of MonashHeart, Southern Health, is its Patients have historically been monitored overnight in the provision of heart services across the whole age span – from pre cardiac care unit but, with a new cardiac monitoring system submission HeartatKids Victoria November 2 birth when the baby is still in the womb, through to newborn, about to be MonashHeart installed in the paediatricfor wards Monash Medical paediatric, adolescent and adult services. Our paediatric Centre, paediatric patients with heart rhythm problems will, in cardiologists and adult cardiologists work together, often the near future, be cared for on both of the paediatric wards – closely, to provide care to patients of all ages, learning from a more appropriate environment particularly for young children. each other and sharing expertise, skills and experience. For many years now we have provided a paediatric cardiac rhythm service in our cardiac catheterisation laboratory (cardiac cath lab) dedicated to fixing ‘electrical problems’ of the MonashHeart submission for are Heart Kids Victoria November 2011 newsletter. heart. Our other two cardiac cath labs dedicated to fixing ‘plumbing’ problems of the heart, such as heart attack. MonashHeart submission for Heart Kids Victoria November 2011 newsletter.

Dr Andrew Davis performs procedures at MonashHeart

Our dedicated cardiac rhythm cardiac cath lab

Our paediatric cardiac rhythm service is provided by three ‘electrophysiologists’ – specialist cardiologists with advanced skills in managing and treating electrical problems of the heart. Dr’s Andrew Davis and Andreas Plummer have honorary appointments with us. They spend the majority of their time at the Royal Children’s Hospital but once per fortnight undertake a cardiac cath lab list at MonashHeart. Dr Jeff Alison is our Head of Cardiac Rhythm Management Services, and he has an honorary appointment at the  Royal Children’s Hospital where  helps with cases from time to he time. Jeff is a very experienced, skilled and well respected adult electrophysiologist, but he also frequently performs cardiac rhythm procedures on teenagers at MonashHeart.

Procedures include: MonashHeart submission for Heart Kids Victoria November •   Cardiac ablation, using various types of energy to destroy or ablate small areas of heart tissue where abnormal heart arrhythmias originate from. • Implantation of a pacemaker, a small electronic device inserted under the skin in the upper chest/shoulder area with connecting wires passed through into a vein into the heart. The pacemaker senses if the heart rhythm is abnormally slow allowing stimulation of the heart activity when required. • Implantation of an implantable cardiac defibrillator (ICD), a small electronic device that is inserted under the skin in the chest/shoulder area with special wires passed through a vein into the heart chambers. The ICD senses dangerously abnormal heart rhythms and delivers pacing or a small shock to restore normal heart rhythm when required.

Dr Jeff Alison is the Head of Cardiac Rhythm Management Services 

Currently MonashHeart usually  performs cardiac rhythm procedures on patients who are aged greater than 6 years of age and or greater than 30 kilograms, but there are exceptions. The youngest cardiac rhythm patient procedure we have performed was that on a tiny 2 year-old flown over from Tasmania after a cardiac arrest and possible heart rhythm problem. Andrew and Andreas perform cases on the younger children, while Jeff is busy performing procedures on teenagers.

Even children suffer heart rhythm problems

Arrhythmias of the heart (abnormal heart beats) can be either too fast or too slow, both of which can be disconcerting to the patient or life threatening at the extreme. MonashHeart is proud of the collaborative cardiac rhythm service it provides Victorians of all ages. To learn more, see our award winning website: www.monashheart.org.au

IN HOSPITAL

A special hello an d our very best wishes to all the heart kids w ho have been in hospital in the last three months. 6


The New Royal Children’s Hospital The Royal Opening of The New Royal Children’s Hospital

After more than seven years of planning and construction, the new Royal Children's Hospital (RCH) was officially opened on Wednesday 26 October 2011 by Her Majesty The Queen. The Queen is the Patron of the RCH and in fact opened the old hospital in February 1963, a day remembered as one of the great days in our 140 year history. The Official Opening Ceremony took place at the new hospital between 11.00am and 12.00pm on Wednesday 26 October. More than 700 guests in Main Street, as well as 200 plus staff on the balconies and bridges, comprised a cross section of the RCH community – patients, families, staff, as well as donors, supporters, government, those associated with the new RCH Project and representative of broad community groups that support the hospital. The Queen and His Royal Highness The Duke of Edinburgh were welcomed at Emergency by the Honourable Ted Baillieu MLA, Premier of Victoria and Mrs Robyn Baillieu, RCH Chairman Tony Beddison AO and Mrs Robyn Beddison OAM and RCH CEO Professor Christine Kilpatrick, before taking a tour of the new hospital to meet staff and some of the young patients and their families. The Queen toured Emergency, the Koala (Cardiac) Ward and the Meerkat enclosure in the Specialist Clinics before proceeding to Main Street for the official Opening ceremony. The Queen unveiled a beautiful commemorative plaque to officially open the hospital and was presented with a gift from the patients at the hospital, a book of artwork created by the children. The Queen and The Duke of Edinburgh also signed the RCH Visitors’ Book before their departure. This is without question, one of the most exciting periods in the history of the hospital.

RCH Morning Tea

atient families All ward, ICU and outp for morning tea are welcome to join us 10:30am - 12:00pm every Thursday from on the 3rd Floor. in the Parent Lounge eing you there! We look forward to se

Patients Move Into The New Royal Children’s Hospital The Royal Children’s Hospital (RCH) has successfully moved into its new state-of-the-art facility, next door to the old hospital site on Flemington Road in Parkville on Wednesday 30 November. It took just under 8 hours to move 143 inpatients from the old hospital into the new, with hundreds of staff involved in making the move a great success. Right on the target time of 7.00am, patients started their move journey via the purpose-built passageways. It didn’t take long for the new hospital to be operating in fullswing. The new Emergency Department opened at 8.00am with the first ambulance arrival at 8.30am. The first surgical theatre procedure was performed at 11.00am on a young male patient who suffered a displaced hip from a sports injury. At 3.00pm the final patient to move was five-week old Connor, an intensive care patient.

Settling into the new RCH Since the hospital opened, patients and families have had a wonderful time exploring the new environment that has been uniquely designed for children and young people. The spaces are fun and stimulating. Patients have settled in comfortably to the bedrooms, of which 85% have direct views of the parkland. The views, the playground and open spaces allow patients and families to take a break from the stress of their hospital stay. The two-story coral reef aquarium and the meerkats have also been star attractions. A range of activities were also held across the hospital to celebrate the first Christmas in the new RCH. Musicians from a range of community groups performed and an impressive nine-metre high Christmas tree featured in Main Street. The tree was lovingly created, designed and donated by the Kmart team. Santa, accompanied by Metropolitan Fire Brigade also paid a visit to patients, families and staff to spread the Christmas cheer.

New website: www.rch.org.au/ Take a few moments to explore the new RCH website, the popular sections are still the same but the new main pages make useful information easier to find. The new design also reflects the new hospital and brand. Click on the main information tabs prominently displayed on the home page and acquaint yourself with the new world-class building and facilities. Top: First newborn intensive care patient (cardiac patient) Middle: Cardiac patient 16 year old Paige Berry settled into the new hospital Left: Staff move patient through Main Street of The Royal Children’s Hospital to the new inpatient unit The New RCH articles were written by RCH Corporate Communications

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RCH News Home INR monitoring program On the 16th of November, the Home INR monitoring program won the Victorian Public Healthcare Award for “Excellence in healthcare outcomes through person-centred care”. This Home INR monitoring program is the initiative of the Clinical Haematology department at the Royal Children’s Hospital, and is coordinated by Professor Fiona Newall and Sophie Jones. Fiona and Sophie were joined at the awards dinner by the hospital’s Chief Executive Officer, Prof Christine Kilpatrick, to receive the award from the Minister for Health, the Honourable David Davis. The Home INR program was initiated in 2003 by Fiona Newall and the Clinical Haematology team to minimise the impact of frequent INR blood tests on children requiring warfarin. It has since been expanded to support over 90 families who test their child’s INR at home. The majority of children who participate in the Home INR Monitoring program require long-term warfarin due to their underlying congenital cardiac condition. The commencement and expansion of this program has been supported by The University of Melbourne, the Murdoch Childrens Research Institute and especially the philanthropic support of the Jack Brockhoff Foundation. Fiona and Sophie have conducted two research studies exploring the safety and effectiveness of the program, as well as its impact on the children and families’ quality of life. Many HeartKids families have participated in these studies and have made an extremely valuable contribution. The results produced by these research studies, and the specific feedback from families about the benefits of the program, supported the application to receive this prestigious award. More importantly, the studies have identified that home INR

monitoring makes a difference to the quality of life of the children and their parents. We hope that when the results of this study are published in the near future, we will be able to encourage other paediatric centres around Australia to develop a home INR program for their patients. Sophie and Fiona would like to express their sincere thanks and appreciation to HeartKids for their ongoing support of the program and to all the HeartKids families who have participated in the studies conducted over the last ten years. The support and patience of children and families have helped make this program the success that it is. If you would like to support the program’s future development, directed donations to the Home INR monitoring program within the Clinical Haematology Department can be made through the RCH Foundation. Written by Professor Fiona Newall and Sophie Jones from the Haematology Department, Royal Children’s Hospital

Cardiac Surgery takes the cake The RCH Cardiac Surgery team was honoured to have the very best judge for their Great Pavlova Competition grand final last week - renowned Australian cook, restaurateur and food writer Stephanie Alexander. The competition was the brainchild of Cardiac Surgery Director, Christian Brizard. Since January, one contender (surgeons, nurses, perfusionists, anaesthetists and administration staff) per week baked a pavlova for tasting by their colleagues. Each pav was marked according to three categories: flavour, creativity and sheer beauty. The top six earned places in the grand final. The grand final saw the six finalists bake their pavlovas once more for tasting by master judge Stephanie. And the stakes were high – all cooks vying for the revered title of ”Great Pavlova Champion”. Stephanie scrutinised each pavlova thoroughly. She sliced, prodded and sampled the cakes, looking for “maximum marshmallow”. Finally, Stephanie declared one team member the winner: senior cardiac surgery fellow Johann Brink. Johann’s impressive double-meringue pavlova was made from 15 egg whites and flavoured with vanilla bean. Proving cardiac surgeons don’t do things by halves, Johann topped his pavlova with a toffee butterfly, homemade with the help of a candy thermometer and syringes.

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RCH CEO Professor Christine Kilpatrick applauded staff initiatives like this competition for contributing to a high level of camaraderie both within hospital departments and across the organisation. First Place: Johann Brink, Senior Fellow Cardiac Surgery Second Place: Suzanna Kralevski, Cardiac Surgery Manager Equal Third Place: Margaret Sullivan, nurse; Alison Horton, perfusionist; and Ben Turner, Above top: Stephanie Alexand anaesthetist er judging the entries; Above: Fourth Place: Christian winner Johann Brink with Brizard, Director Cardiac Stephanie Alexander and his Surgery winning pavlova and trophy

This article was written by RCH Corporate Communications


RCH Education Institute The hospital space is a learning place

rne (RCH) opening in late November and whilst It has been an exciting time with the new Royal Children’s Hospital Melbou they’re now well recognised as places rich in learning. hospitals were once traditionally seen as places only for clinical care, on Institute for the past three years and during that time Glenda Strong has been the Executive Director of the RCH Educati continuing children and young people’s education whilst on placed Glenda has seen big changes in terms of the importance managing a health condition. “Increasingly, RCH teachers are becoming a vital part of each ward team in the hospital. What’s great about our teachers is their energy, enthusiasm and their ability to engage children in learning.” All RCH teachers are VIT registered and provide valuable learning opportunities for children and young people at the hospital, to help fill the gaps created through absence from school. In 2012, the RCH Education Institute will hold a series of Parent Information Sessions to enable families to meet the RCH Education Institute’s teaching and A young learner participates in a filmmaking workshop support team, and learn practical strategies to assist n. conditio health a ng managi whilst learning ’s children stay engaged in learning. Glenda says it’s the little things that can mean children and young people if children are unable to attend school due to their health “Families play a key role in children’s learning and development. Even , and the RCH Education Institute is here to support condition, there are many simple, everyday ways to continue their learning parents in doing this.” new year, please email your contact details including email If you are interested in attending Parent Information Sessions in the address to education.institute@rch.org.au .org.au/education For more information on the RCH Education Institute visit http://www.rch

Introducing Mikaela: RCH teacher profile

official opening where she was lucky enough to be Mikaela Little is excited about the move to the new RCH following its “a day I’ll never forget.” introduced to Her Majesty the Queen, on what Mikaela describes as with children and young people in the Koala Ward Mikaela is one of the RCH Education Institute teachers who will work RCH. new the at (specialising in cardiology, cardiac surgery and nephrology) and, whilst trained in visual art and media studies, Mikaela Mikaela has been with the RCH Education Institute for twelve months has a strong interest in technology, particularly iPads. use, especially for young learners with limited mobility. As a “iPads are a great tool for learning because they’re fun and easy to terms of their learning, so I can adapt to each child’s needs teacher, the iPad Apps help me get a feel for where a student is at in and take them to the next level”. likes to try with young learners when possible. Extending learning beyond the bedside is an approach that Mikaela to facilitate learning. The spaces and features of the new “As a teacher at the RCH, we must be flexible and find innovative ways young people in the Koala Ward.” and hospital will help me do this, and I can’t wait to share it with children

RCH teacher Mikaela Little and Koala Ward Nurse Unit Manager, Danielle Peucker in “The Nest”, the Koala Ward activity room

Thanks to the RCH Education Institute for providing this article 9


Celebrations! Natalie Scane

and healthy baby however at Natalie was born on the 11th of November 1990. She was a strong had been unwell for a few the age of 2 years and 5 months our world turned upside down. She around the lips. She blue turning weeks and one morning she could hardly stand up and was Royal Children’s the to sent then and ed ended up in Box Hill Hospital where she was stabiliz lntensive Care. in t suppor life on put and ditis Hospital. She was diagnosed with viral myocar by a virus. d attacke being to due ning functio barely Her heart was very enlarged and was intensive care her condition Although the outlook was uncertain we were lucky. After 5 days in when she was first told been had We ward. improved enough to move her to the cardiac be in hospital for ly probab would she did she if and it admitted that she might not make 2 weeks in the after enough ed improv she lously Miracu sick. so several weeks as she was months with the same cardiac ward to be allowed to go home. Natalie was treated for 12 l regularly. She continued medication as heart transplant patients and so attended the hospita h she had many Althoug 18. at to return for checkups and tests until her last appointment for her heart. nts treatme further no d admissions to hospital for other illnesses she require Swinburne. She now works Natalie completed Year 12 and studied Visual Arts for two years at and healthy and enjoys active is She in the hospitality industry and is currently living in Noosa. beach. As she the at time g spendin all of playing sport, being with her friends and most has grown up she and her have to blessed are we reaches her 21st birthday we know that to the fullest. day every living of nce importa the and is health knowing how important good

Ben Rethus Hi, my name is Ben Rethus. I am 13, and I have Tetrology of Fallot, and had open heart surgery when I was 13 months old. I have played many sports, including soccer, basketball (my favourite) and footy. Sometimes when I play, I do get puffed, but my coaches know and understand that I might need to have a rest. This year, I won the best club person award in my U13 football league. This award was given to me because for 4 years, I had a physical disadvantage, but that never stopped me from giving 100% every week. My mate, Jamie, who is also a heartkid, won it last year! So even though you are a heartkid, don’t be afraid to get out there and have a go!!!

William Arrowsmith

Jessica Curgenven Jessica celebrated her 18th birthday this year and her family are very proud of her and her attitude to life - she is an inspiration to many people. Recently Jessica has taken up horse riding through the RDA (Riding for the Disabled Association). She is really enjoying it which is awesome as she is limited in what she is able to do due to her ongoing health conditions.

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After a couple of years participating in the Milo cricket program, this year William was encouraged to join in his first real club cricket games with the U11s at Pakenham Upper (better known as Yabbieland!!). At only 6 (nearly 7) William is by far the youngest and smallest on the team with many of the boys & girls having played for several years. Although at the moment he doesn’t throw as far, run as fast or always hit the ball, he has become a member of a wonderfully supportive team of kids & coaches. They constantly cheer him on and encourage William and each other. Although William was a bit nervous about joining he is really enjoying the experience and will only improve his skills with the encouragement he gets. It makes his family so proud to watch William, who so far has had two major heart surgeries, with more to come as he grows, being out there with his team, participating in a sport and doing the best he can.


Starting School

Congratulations!   

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Congratulations and our very best wishes to all these

New Babies

 families who have welcomed new babies in recent months. Daniel & Laetitia Ferguson have a new son HK Djarhyn Nullah James born on 21st June. A little brother for Shaniqua, Trey, Rhykha & HK Shailah.

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Paul Rumble & Beatrix Tomlin have announced the birth of their daughter HK Yve, born on 31st July.

Matt & Kylie Moore welcomed their baby son HK Lachlan Rodney Moore on the 9th August.

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Todd & Catherine Newman & big sister Phoebe welcomed their baby girl HK Eliza Catherine on 23rd September ....everyone’s fighter!

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The Reilly/Smith family have announced the arrival of HK Nate, born 28th September. Congratulations to Paul, Marnie and big sister Ella.

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Matthew & Suzanne Hall have welcomed the arrival of their son HK Samuel on 8th October. He is a brother for Hannah.

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Richard Lennon & Claire Sluyters-Lennon have a new baby boy HK George, born 20th October. Baby brother for Charlie and Alice.

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The Catania family are introducing Zoe Lisa, who arrived 27th October, a baby sister for HK Wes.

Andrew & Angela Frankel have announced the birth of their daughter HK Ruby on 7th November.

• Primary School - make an appointment with the principal and your child’s teacher.

• High school – make an appointment with your child’s year level coordinator, sports coordinator, welfare coordinator, school nurse (if applicable) and principal.

 

   

Daniel & Meagan Willmott announced that HK Emma has a little brother Riley, born on 18th December.

Ryan & Fiona Dowie welcome Lincoln Jack, born 20th December, a new brother for Kobe, HK Alaska & Tilly.

Gab Coles and Shannon Myers announced the arrival of Jarvis, born 22nd December, a brother to HK Saxon.

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.

 

 

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

Happy Birthday!

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

Here are some suggestions for helping the transition to school:

Your child’s cardiologist or paediatrician would alert you if there are any specific recommendations for your child. Please ask them to provide supporting documentation for preparation of a health care plan/First Aid action plan.

Peter & Judith Harvey have announced the arrival of HK Zoe on 22nd October. Zoe is a baby sister to Alex, Emily and Jake.

Heart children like to feel that they are no different from their fellow students and as far as possible, should be treated the same as their peers. However, their condition may have some impact on their schooling. If the condition is minor they will be no different from their class mates, however a major condition will have some impact.

1. We recommend that you discuss your child’s heart problems and any anticipated effect this will have on their schooling with the following people:

Daniel & Debra Connell and the twins Killian and Eowyn welcomed HK Niamh, born on 12th October.

Ayesha and Rafe Horsington have announced the arrival of their baby HK Clancy, born 6th July. A little sister for Saxon and Layla.

Heath & Jessica Shakespeare and big sister Ava have announced that their baby boy HK Austin arrived on the 1st September.

When any child starts school or moves on to high school, it can be an exciting but stressful time for parents. When your child is also a heart child who has faced many challenges it makes all these feelings more intense. Most principals and teachers are only too happy to listen to your concerns and very eager to know as much about your child’s condition as they can. You may like to refer them to the HeartKids website www.heartkidsvic.org.au for further information and access to related sites.

  

2. Speaking at a staff meeting early in the school year gives you an opportunity to explain your child’s needs and time to discuss any issues or questions staff may have. 3. If your child cannot keep up during physical education classes or is struggling to keep up with the class group on excursions that involve considerable walking, the class teacher needs to understand and make allowances for this. 4. Give a copy of HeartKids ‘Teachers and Carers’ brochure to the principal and teacher. For a copy see www.heartkidsvic.org.au then look under the Resources-Information section. 5. If your child has specialist teachers, ensure they are informed of your child’s condition. 6. Complete a First Aid Action Plan, with a photo of your child, for the teacher and suggest that it be displayed in the staff room and sickbay, as well as all emergency kits. For high school students some parents suggest keeping a copy in the student’s diary and the teacher’s roll book for emergency teachers to use. 7. Ensure that your emergency contact details are always current. 8. During excursions and camps ensure a copy of your child’s Action Plan is given to the supervising teacher and accompanies the emergency kit. Please remember good communication is essential between parents and teachers and ask for support from your child’s health care professionals when necessary.

2012 Photo Request

!

If your heart child is sta rting day care, kinder or school, or moving on to second ary or tertiary studies, please send us a photo for pr inting in the newslette r. Write a brief paragraph tellin g us of their achieveme nts and remember that high re solution photos print well. 11


Christmas .... Melbourne Christmas Party

rne Zoo. Unfortunately the weather was very wet but around 600 On 26th November HeartKids held a Christmas party at the Melbou g face painting, caricature drawings, animal drawings, cup cake people attended. Families enjoyed four hours of party fun, includin characters, raffle and of course, the very important, Santa. decorating, party games, a fairy show, a magic show, music and animal of them donated their time and we are grateful for their Many thanks to all the entertainers who attended the party. Many their help, the party would not have worked so well. A generosity. We were lucky to have the help of many volunteers – without Melbourne Zoo for having us each year – this is our fourth the thank big thank you to all our volunteers who helped on the day. We ing. annual party there and we appreciate the Zoo staff being very welcom Special thanks to: Zoos Victoria Food Group Lord Mayors Charitable Foundation, Youth in Philanthropy Retail Levent Efe Luke Watson George Haddon Roar (City Life Church) Alan Rose Paul Harvey Sonya Leonello Jock Macneish Warren Smith from Magical Mountains Victoria Witter and David Witter Santa (TSS, Westaff) the Parcel’ Fairy Abby and Wizard Herman Ffyona and the team from ‘Pass We appreciate donations from: Cotton On Foundation Green Hat Workshop Educational Colours Pty Ltd Kookaburra Sport Pty Ltd Bakers Delight, Beaumaris Bochetta Plush Toys Pty Ltd Village Road Show Corporation Ashdene Manufacturing

Tomy Australia Pty Ltd Danoz Direct Blush Photography Salton (Aust) Pty Ltd Global Shop Direct Lawrencia Cycles United Bonded Rebel Sports

Division 6 Kiwanis Craig Hilton Marco the Magnificent Laura Pike

Crown Melbourne Lego Australia Pty Ltd Mattell First Choice Liquor Mornington Brand Developers First Avenue Collection (Jeannette Berry) Deebee Bags Sara McDonald, Avon Consultant Diana Ferrari RACV Holdmetight Shapewear Five Mile Press Lombards The Paper People – Moorabbin and Keilor Park Lyndsey Crowhurst and Helen Sibbison, Channel 7 Korimco Stefanie Sonnleitner (Sales Executive – Kerri-Anne), Channel 9

Shane Larsen, Anna Domine, Margaret Patullo, Amy Emmett, Thanks to the HeartKids Christmas Party Committee: Kathy Petras, llough and to the raffle sub-committee, Jodie Grocock and Noel Scott, Natalie Palmer, Tracy Stanley, Terry Hopkins, Lynette McCou Justine Franklin.

Geelong Christmas Party

As you can see in the photos, the Geelong Branch held another successful Christmas Party on Saturday 3rd December. Thirteen families, including 30 children, enjoyed an awesome disco proudly provided by DJ Mitch, who generously donated his time. The day would not have been possible without the generous donations from Big W who supplied the goodies for the gifts bags. Special thanks to the Godfrey and O’Connor families for their donations.

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Thank you to Cassie Silva for face painting on the day, to Hepburn Springs Crystal Spring Water for supplying the drinks and especially to Santa for taking time out of his busy schedule to visit us. Thanks Adam for helping out on such short notice. And lastly to Wayne and Brittany for all their help and support not only at Christmas, but throughout the year. Libby Gibson Geelong Branch Coordinator


.... Celebrations Melbourne Christmas Party

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Family Fun Weekend Camp in September, thanks to Kiwanis

Thanks to the Kiwanis Clubs in Division 6 for sponsoring the third annual Candlebark Farm Camp held near Healesville

FunFlight 2011

World Record Attempt

FunFlight is a not-for-profit volunteer organisation that offers children and teenagers touched by a life changing illness or other adversity, a day of aviation based entertainment, together with their families. Their aim is to give children touched by adversity the flight of their life. This year events were held at Lilydale, Tyabb, Latrobe Valley, Horsham, Bendigo, Echuca and Barwon Heads. Thirty-one HeartKids families participated and had a magnificent day. We would like to thank FunFlight, the Aeroclubs and all the volunteers for putting on such a wonderful event.

Pass the Parcel organised the World’s Largest Fairy Gathering at the Kyneton Botanical Gardens. 482 fairies attended the event and organiser Ffyona Rigby is seeking acknowledgement by Guinness World Records. The weather was perfect on 27th November, so the large gathering of fairies danced and played, enjoyed the entertainment and raised $4000 for HeartKids. Pencil in Sunday 28 October, 2012 for the next event!

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Photos kindly supplied by Kim Selby Photography


Kiwanis Sponsored Family Outings Box Hill Miniature Trains

Fun for all the family on Saturday 22nd October at the Box Hill Miniature Trains thanks to Waverley Kiwanis Club

Myuna Farm Day

our Heartfelt thanks to the Sunbury Kiwanis Club who sponsored ber. Novem 6th on Farm Myuna at wonderful day out

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45%

HeartKids Australia News 46%

Excellent

Very Goo Good

Our Cuppa for Heartkids Campaign is now coming to an end and this was a great success, raising over $100,000 – once again, it was thanks to all States for their local efforts well good value forthemoney. Now we have theasexperienc as the ‘back office’ help of Chami, Linda and Soula. There were education day next year. over 380 registrations completed in October but we anticipate that before the campaign is over this number will exceed 400.

Our Cuppa for Heartkids Campaign is now coming raising ove to all the S ‘back offic were over but we ant this numb

First of all a BIG thank you to everyone at HeartKids who has made me especially welcome since I took over from Neil in September. I was fortunate to meet many of the Family Support Coordinators (FSC’s) at HeartKids National Conference and Childhood NEWSLETTER Heart Disease Education Seminar and was most impressed HeartKids Australia News with their obvious dedication and commitment to this organisation. The whole conference and the education seminar Firstfeedback of all a BIG you to everyone at HeartKids who have made was a huge success from the wethank received, with over 90% Number of people rating their overall impressionwelcome as very good excellent. we especially since Itotook over from Neil in September. I of Cuppa for HeartKids events held per State, as at mid October was attended fortunate to many ofand the itFSC’s The Education Seminar was bymeet 150 people was at the National PHOTO great to see so many parents (and their thereDay as and well.was mostOne of our with major sponsors, Pasta Master (General Mills) ran Conference and kids!) Education impressed their One of major sponsors, Pasta Master (General Mill The vast majority of attendees that the content was a team building obviousbelieved dedication and commitment to this organisation. The challenge for their employees in Victoria – to relevant as well as the overall experience being good value for build a bike from scratch, donating the finished bikes to needy building whole conference and the education day was a huge success from challenge for their employees in Victoria – money. Now we have the experience, it is intended that we will Heartkids. theanother feedback we received impressionfrom as very scratch, donating the finished bikes to needy H run education daywith nextover year.90% of people rating their overallLooking forward, there are exciting times ahead with Teen goodCamp to excellent. The lucky were: Caleb CobbAwareness (Tasmania), Noah being heldrecipients in Sydney as well as our CHD Education Day was Month Campaign to be implemented during the month of (NSW) Jai Upkett (NT), Tamia Bowman (SA) , Kyneis What was your overall attended by 150 people February – did you know that February 14th was National Adrienne D’Amonte andplanned Jesse Fry from a number(WA) of events impression of the seminar? and itCHD was Awareness great(Qld), to seeDay? so We have with our major sponsor, the Retail Food Group (Michel’s 9% many parents (and their (pictured) Patisserie, Brumbies and Donut King) as well as a photographic kids!) there as well. The Excellent competition run through Facebook - Capture a Heart. 45% vast majority of attendees Very Good Alan Bowden believed that CEO the content Good Interim 46% was relevant as well as the HeartKids Australia overall experience being good value for money. Now we have the experience, it is intended that we will run another education day next year.

‘My Little Red Head’ s Campaign is now coming tKforid Ourar Cuppa Heartkids to an end and this was a great success, He Avelynn’s LITTLE HEAD raising overMY $100, 000RED – once again, it was thanks Diamond story has to all the States for their local efforts as wellthe as the touched Pendant ‘back office’ help of Chami, Linda and Soula. hearts of There Note: spine width will be narrower than shown. Spine width will depend on final page count and paper selection.

BIOGRAPHY & AUTOBIOGRAPHY / Personal Memoirs

Facing difficult and dangerous surgery before she was 10-daysold, Avelynn ... [rest of blurb to follow]

MY LITTLE RED HEAD

This extraordinary book details one Australian family’s heartwarming and heartrending struggle with the personal, medical, and emotional turmoil of raising a child with a serious congenital heart defect. Ayelynn was diagnosed before birth with Truncus Arteriosus, a rare and dangerous heart defect.

The Extraordinary, True, Amazing, & Amusing Story of How Avelynn Survived Heart Disease Michelle Wood

cover design notes Title: My Little Red He subtitle: The extraord trim size: 150mm x 23 page count: [to follow thickness: [to follow] author’s website: http inside cover blurbs: H forward by: A Prof Ch Children's Hospital; o publisher: Woodduck printers: McPhersons printers’ web site: http ISBN: [to follow] title color: red subtitle color: blue (to Other: baby pix on ba Woodduck logo on ba

Published by:

Woodduck Press

[postal address to follow] Melbourne, Australia

16

[ISBN barcode to follow]

Michelle Wood

JMS Diamonds is were over 380 registrations completed October manyinothers proud to announce who too but we anticipate that before the campaign are is over the launch of the beautiful struggling this number will exceed 400. HeartKids Diamond Pendant. to cope with their child’s Skillfully handcrafted locally in , the chronic Melbourne from 18 ct white gold 00. illness. beautiful pendant is valued at $5,2 to e labl avai only r, offe cial spe In this This story onds(General Mills) ran a team Diam ters, JMS suppor OnertKi ofds major sponsors, Pasta Master Hea shows you it e, piec With a special foreword by World Renowned Heart Surgeon lity qua this highfor offeringchallenge isbuilding Christian Brizard, MS, MD their employees in Victoria – build a Prof bike is possible e mad an Itali lity g a fine qua udin incl to overcome from scratch, donating the finished bikes to needy Heartkids. The PHOTO neck chain, for $3,450 (inc). life’s challenges and to live an lucky recipients were: Caleb Cobb es (Tasmania), Noah De Sousa This gorgeous pendant also com inspirational (NSW) Jai Upkett (NT), Tamia Bowman (SA) , Kyneisha Gracelife. It is a triumph of logo with an optional HeartKids the human spirit which can endure rt. Jesse Fry from Victoria hea (Qld), Adrienne (WA) and back of the d on theD’Amonte rave eng incredible odds and overcome adversity. hase purc t dan (pictured) 0 from each pen $50 Copies of this book, which can be will go to HeartKids Victoria. JMS a ordered through HeartKids, cost $19.99 vide pro to py hap is Diamonds can s (plus postage & handling). uirie enq All te. ifica cert n valuatio at: n Jaso to cted dire be $5 per copy donated to HeartKids. JMS Diamonds on (03) 9654 8485.

Helping Hand is Here All your disability needs are met on our online disability directory. Stay informed about government assistance, support, services, fund ing, programs, media releases, news, recreation, respite options, travel, organizations and inspirational vide os relating to people with additional needs. Our mission is to connect carers to disability support and services. Visit: www.helpinghandishere.com .au


Reflections Heart Angels Asha McNamara 16.05.2011 - 10.09.2011 “A moment in our arms ...... A lifetime in our hearts.”

Kiara Ward 8.10.2005 - 21.9.2011 Kiara touched the lives of many people and her strength, love, courage, and determination to live life to the fullest will always be remembered by those who knew her. You are now free to ride the rainbows and chase the butterflies. Those we love don’t go away , they walk beside us everyday. Unseen, unheard but always near, still loved, still missed. ~When you touch someone with your spirit And in turn they touch your soul with their heart~ (Unknown Author)

Remembering Jacqui Johnson HeartKids was saddened to hear of the sudden death in October of Jacqui Johnson. Jacqui, whose grandson is a heart child, was an active volunteer for HeartKids, making and selling personalized Christmas baubles and working on stalls with her sister selling soft toys.

She is Gone You can shed tears that she is gone Or you can smile because she has lived You can close your eyes and pray that she will come back Or you can open your eyes and see all that she has left Your heart can be empty because you can’t see her Or you can be full of the love that you shared You can turn your back on tomorrow and live yesterday Or you can be happy for tomorrow because of yesterday You can remember her and only that she is gone Or you can cherish her memory and let it live on You can cry and close your mind, be empty and turn your back Or you can do what she would want: smile, open your eyes, love and go on. David Harkins

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

Birth Dates Paul Livingstone 2nd December 1981 Jaime Ekberg 19th December 2005 Kristiana Thomaidis 20th December 2004 James Kelleher 21st December 1991 Lucas Stone 23rd December 2009 Jonathan McGrath 29th December 2007 Ethan Hanley 16th January 2002 Heidi Hansen 30th January 2007 Amy Dawson 11th February 2010 Andrew Lillis 13th February 2004 Max Barker 21st February 2008 Stephen Buckman 26th February 1991

Anniversary Dates Zach Beadel 29th November 2010 Jesse Cotter 1st December 2008 Jackson Walsh 28th December 2009 Frank Desensi 29th December 2009 Oscar Batrouney 30th December 2009 Matthew Moran 15th January 2005 Heidi Hansen 30th January 2007 Lucas Stone 31st January 2010 Georgia Morrison 17th February 2000 Andrew Lillis 19th February 2004 Mary O’Keefe 22nd February 2006 Kristiana Thomaidis 28th February 2009

Thinking of You

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

t Support Services Grief and Bereavemen

vices is available in the A variety of support ser d families. community for bereave nd on and websites can be fou A list of organisations g.au .or at www.heartkidsvic our HeartKids website gh the , then scroll down throu Click on the tab ‘Links’ es. links to the various sit

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HeartKids Fun Events

Cuppa For HeartKids During the Cuppa for HeartKids campaign our supporters hosted 49 Cuppa events and 20 Mad Hatter’s Tea Party events raising a total (received so far) of $18,785.

Pakenham’s October Coffee Morning

The Wonthaggi group arranged a Cuppa for HeartKids fundraising event on Monday 26th September at The Fun Shed, Cowes

Play Group

Hea rtKi ds Vict oria will com men ce a wee kly pla ygr oup in Bun cle Stre et, Nor th Me lbo urn e sho rtly. We will mee t from 12:1 5pm – 2:15 pm on Frid ays for chil dre n age d 0-5 yea rs. We will be join ed occ asio nall y by NG Tub e Kid s. Ple ase reg iste r you r inte rest in atte ndi ng by ema iling hea rtki ds@ hea rtki ds.o rg.a u If you are inte rest ed in volu nte erin g to help run the pla ygr oup ple ase sen d an exp ress ion of inte rest to the abo ve ema il add ress .

Sincere thanks to all our hosts - we appreciate you supporting this campaign raising awareness and funds for HeartKids and we look forward to building on the success of Cuppa for HeartKids next year.

The Dugdale family held a Mad Hatter’s Tea Party at HK Isaac’s childcare centre

Rocotillos Cafe in Frankston held a Mad Hatters Tea Party for the Cuppa campaign on Saturday 17th September with all proceeds being donated to HeartKids Victoria. Thanks to all who attended, the sponsors (Crivelli coffee and Wood Metal String of Bayside Shopping Centre), and special thanks to Active Boxing of Frankston and other Rocotillos customers for their donations during the lead up to the event.

ch held a Picnic in The Bendigo Bran r ay 11th Decembe the Park on Sund . as tm ris Ch e to celebrat m Ky r t function fo As this was the las ordinator, Br role of anch Co Fitzgerald in the rewell. Thank You and Fa we say a sincere welcome Natasha We are pleased to e role. has taken over th Prendergast who

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Wonderful support! Melbourne Heart Soccer

Good Charlotte

Here’s HK Eli Hack and two of his big sisters, Zina & Zanthea, with Benji Madden from Good Charlotte. The American rock band visited Ronald McDonald House in Parkville to help promote McHappy Day.

Thanks to Melbourne Heart for their generous donation of tickets so a number of HeartKids families could enjoy the game against Newcastle Jets on 12 November at AAMI Park. Melbourne Heart won 3-0.

Baby Scales The Walsh family made a gift in memory of their heart angel Jackson in honour of his second birthday.

Christmas Stockings

Their generous donation was used to purchase 12 sets of scales for the Koala Ward.

A big thank you to our friends at Little Tinkers for donating Christmas Stockings for all the children in the cardiac ward.

Finnan’s Gift to The RCH

A remarkable achievement in fund raising was honoured on 20th October 2011 at The Royal Children’s Hospital, as Alisa Cam plin and Oliver Warner unveiled the $300,000 stat e-of-the-art echocardiology scanning machine purchased in memory of their son Finnan, who passed away earlier this year at just 10 days old from Congenital Heart Disease. HeartKids Victoria was proud to don ate $25,000 towards the purchase. The funds were part of the proceeds from our Run Melbourne sponsorships and more specifically the amazing efforts of our Ambassador Glenn Archer.

VAD

ded HeartKids Victoria fun “Longthe of on cti the produ device term ventricular assist let for ok (VAD) information bo s”. patients and familie

assist A VAD is a ventricular rt po device that can sup d to ne sig de the heart. It is rt po sup erm g-t provide lon are s art he e os wh for children to sed ea dis or d ge ma too da w. flo provide enough blood

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Acknowledging.... Lord Mayor’s Charitable Foundation

Grammar students with Here’s a photo of the St Michael’s & Tracy Stanley, Support Terry Hopkins, HK Vic CEO (centre) ritable Foundation Cha Manager, (left) at the Lord Mayor’s cheque presentation. Through the Youth In Philanthropy program, the students provided a grant of $6,500 which was a major contribution to our Melbourne Christmas Party.

Ha pp y Bi rt hd ay Er in !

F o o ty C o lo u rs D a y

Here’s a photo of the Baldacchino family with heart child Jessica presenting a cheque to Amy Emmett of HeartKids. Jessica’s cheque was the proceeds from a Footy Colours Day held at her father’s work, APV Automotive .

Biggin & Scott Presentation

Pau l Sto ner, Rus sell Cam brid ge and Mic hell e Pag e from Big gin & Sco tt pre sen ted a che que for $8,4 00 to Terr y Hop kins - the com mis sion from the sale of Pol ly & Wa z’s hou se on The Blo ck.

Tha nks for sup por ting ted you r 30t h birt hda y! Hea rtKi ds Erin , as you cele bra

Ki w an is D on at io n

MS E Eve nts

Terr y Hop kins acc ept s a che que for $30 ,000 from Ted Kitt o and Phi l Rig gio of Kiw anis on beh alf of Hea rtKi ds Aus tral ia. The don atio n will be spre ad acro ss all of the Hea rtKi ds Sta te org anis atio ns.

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Sarah Livings tone of MSE Events presen ting Terry Hopkin s, CEO of HeartK ids Victori a, with a cheque for $2,125 raised at their Brown low Medal Calcut ta held at the MCG to raise money for charity.


....Special Efforts! Bro adm ead ows Car & Bik e Sho w

The 3rd Annua l Broadm eadow s HeartK ids Car & Bike Show was held on Sunda y 13th Novem ber at Penola Colleg e. The day was a great succes s with approx imatel y 300 cars on display, motorb ikes, live music, face paintin g, raffle prizes, giveaw ays and kids enterta inment . With the help of genero us local busine sses, display vehicle s, gate entry, raffle tickets , and sales of food and drinks, the Car & Bike Show raised $14,74 2.40, a substa ntial amoun t of $7000 above last year’s total. Adam and Luisa Michie lin would like to thank family and friends who helped organi se the event and all who helped out on the day, especi ally the genero us sponso rs listed below: R & A Art – Real Estate & genera l photog raphy 123 Jumpin g Castle s Komp Cranes Rotary Club Pascoe Vale C.M.S Meats Crivell i Coffee Penola Cathol ic Colleg e D’Apra no Real Estate Jaded Cats (live band) Airpor t West Motors Bombe rs Auto Port A grade Memo rabilia Ansett Flight Simula tors

Auto One Niddri e All cars in Scale GL PRO sound Add Air Condit ioning P/L Fastfle x Heatin g and Coolin g Autote ch tools Pireau s Blues Restau rant

Rider Bros Cobur g Tyre Service Hella’s Printin g Harley Heave n Ron Mac Panels Britann ia Paving Batma n Café

Adam and Luisa said, “As parent s of a heart kid, it’s great that we can raise funds for such a worthy cause. With more sponso rs alread y promis ed for next year, we are hoping for anothe r succes sful event in 2012.”

Photos left to right: Terry Hopkin s, HeartK ids CEO, presen ting trophie s to proud recipie nts; HK Julian Michie lin and his cousin Lucas enjoyin g the Car & Bike show; Julian’s sister Carla and cousin s enjoyin g the face paintin g; An aerial shot of the Car & Bike Show.

In au gu ra l Ci ty 2S ea

The inau gur al Sun day Age City 2Se a pre sen ted by We stp ac was held on Sun day 13 Nov emb er, star ted at the Arts Cen tre and 201 1. The run trav elle d alon g a sce nic 14k m rou te to a spe ctac ular fini sh by Kild a. the sea in St 13,0 00 peo ple par ticip ate d and rais ed mo re tha n $43 0,00 0 for cha rity. Sev en tea ms sup por ted Vict oria rais ing $18 ,545 .10. We Hea rtKi ds wou ld like to ack now led ge the spe cial effo rt of the McN ama ra ama sse d an ama zing $17 ,680 .10 fam ily who in mem ory of the ir dau ght er Ash a - the y wer e the sec ond hig hes fun dra iser s for the eve nt. t ind ivid ual

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Thank you for your recent gifts... Adoring AL Aitken College Jane Alis APV Engineering Jo Arrowsmith Biggin & Scott Billanook College Wayne Bowden Business Consultants Pty Ltd Erin Casey Shae Cater Erin Cervelli Tung Chau Clayton Australia Julie-anne Compston Julie Cotter Country Womens Association (Murulla) Craig & Stacey Nicole Crew Paul & Nicole Crew Gemma Cuclahan Marion Cuclahan Joy Cugley SG & ON Currie Diamond Valley Superules Dingley International Cathy Drew

Jamie A Dunne East Devonport Fellowship Essendon Superules Inc Shanti Fagan Kevin & Beryl Featherston Ricky & Jo Fin Brian Finn Flavours Café Maddy Florescu Ian & Judy Foley Kirsty Foley Freemasons Victoria Girton Grammar School Ltd LP & NO Groves Maria Gruber Heartbeat Galen Social Club Highvale Secondary College Sherrie Irwin Ashutosh Kapse Kiwanis Australia Kiwanis Club of Shepparton - Sunrisers Knox Tavern Con Konstantinou La Cacciatore Lions Club of Melbourne Markets Little Tinkers

Sharpie’s Charity Challenge

In November Josh Sharp, his wife Elissa and daughter Zahara joined Terry Hopkins at the RCH to attach a memorial plaque to the Heating/ Cooling Blankets that were donated to the Intensive Care Unit using funds raised through Josh’s “Sharpies Charity Challenge Foundation”. Each year Josh completes an amazing challenge to raise funds for his Foundation before donating those funds to charities like HeartKids and Reach.

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Bill Mackay Christine Mannix Megan Marshall PJ & BM Maskrey Justin McCarthy Asha McNamara Memorial Donations Melbourne Heart Melbourne Storm Morwell Neighbourhood House MSE Events Group Pat Murnane R/D Muroney Nelson Alexander Charitable Foundation North Essendon Physio Clinic Northern Motor Group Papa Gino’s Dawn & Kevin Parker Rhonda Rattray Regina Reid Mrs Roberts B&V Robinson Cayley Robinson Donna Rosentengel PE & DI Russell

Don & Alison Scott Erin Scott Noel Scott J Skeen Paul Sorgiovanni South Croydon Vets Football Club St Catherine’s School St Kevins Primary School, Templestowe Peter Tang Telopea Park School Tina Terrill Bronwyn Thomas Fr Donald Thomas Tucker Road Bentleigh Primary School Variety Victoria VCAT Heidi Vickers Pl & SI Waddell Emma Walsh Barbara Wandoch Kiara Ward Memorial Donations Warrandyte Lions Club Inc Michael Warren A & A Young

Fontan Registry The Fontan Registry is a database collecting health information on Fontan patients living in Australia and New Zealand. The registry is a collaboration between the Murdoch Childrens Research Institute, The Royal Melbourne Hospital, The Royal Children’s Hospital Melbourne, Monash Medical Centre, The Women and Children’s Hospital, Royal Adelaide Hospital, Queensland Paediatric Cardiac Service, Mater Children’s Hospital, The Princes s Margaret Hospital, The Royal Perth Hospital, The Heart Centre for Children, The Children’s Hospital at Westmead, Sydney Children’s Hospital, The Royal Prince Alfred Hospital, Westmead Hospital and The Starship Children’s Hospital in New Zealand. It is hoped this will be the largest Fontan database in the world, providing researchers and doctors with information to help improv e treatment options and long-term health outcomes for patients. It is believed there are around 1000 adults and children living in Austral ia and New Zealand with a Fontan circulation, to date approximately one third of patients are included in the Registry. The most valuable research results come when as many people as possible take part in a project. If you or your child had a Fontan operation and are currently living in Australia or New Zealand, we would encourage you to participate by contacting the registry on: E: info@fontanregistry.com T: +61 431 659 911 W: www.fontanregistry.com or contact us at HeartKids and we will send you an information flyer.


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


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Diary Dates

ess  artKids Awaren Car & Bike Show  ry 2012 - Tassie ua br Fe 5  p m Ca ni De to Sunday 11  Friday March 9  ie dd Re el ni Da 2012 Friday 23 March ity Benefit  Foundation Char  y parton Picnic Da  25 March - Shep ay nd Su  b) Fe 1 en op The Kids (entries  1 April - Run For  peal Ap ay id Fr od 12 - Go Friday 6 April 20  e  - Hoffy’s Challeng ril Ap 14 ay rd Satu  tacular  Friday 25 May - HeartKids Spec en now)  urne (entries op  15 July - Run Melbo e or ents check insid  e about these ev or m r Fo  ic.org.au sv id tk ar he w. go to ww

 Month of February - He

MELBOURNE METRO BRANCHES

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

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Contact Details Bairnsdale Caroline Foard 0438 928 821 cfoardy@yahoo.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 KAWASAKI DISEASE Shirley Mates (03) 9894 1257 akfn@optusnet.com.au digo Ben Website: www.kdfoundation. Natasha Prendergast org.au TASMANIA (03) 5441 8262 or 0421 590 169 KABUKI SYNDROME Burnie goliathgroup@bigpond.com 611 330 0448 y Stacey McKiernan Rile Amanda Echuca/Moama (03) 5275 1542 amanda.riley1@bigpond.com Tracey Hard stacey@sakks.org 1274 6433 (03) ne arla Gail McF 0438 962 056 Website: www.sakks.org 0488 033 789 tracnsteve@bigpond.com om nd.c HYPOPLASTIC LEFT HEART themcfarlane4@bigpo Geelong SYNDROME Hobart Libby Gibson (03) 5250 2439 & SIMILAR CONDITIONS 8435 Paul Hyland (03) 6247 905 057 0411 www.hearts-of-hope.org 0418 561 504 libway2000@yahoo.com Leanne Amarant (Victoria) paul.hyland1@bigpond.com (03) 5358 2945 sham Hor Launceston 2280 5384 (03) er Leanneamarant@hotmail.com Bak nor Gay u. joarrow@bigpond.net.a Smith (03) 6393 6240 Kylie om nd.c igpo Csaba Ovari (Tasmania) mtbcarpentry@b 0448 983 587 Point Cook (03) 6229 8169 Latrobe Valley kylie.smith@heartkids.org.au Audrey Cater (03) 9394 7965 453 csaba.ovari@hearts-of-hope.org 955 0427 Sophie Werner 0420 500 905 LONG QT SYNDROME (LQTS) sophia.werner@bigpond.com audrey.cater@bigpond.com E INTERSTAT Sherrie McDonald 0431 544 510 Portland Tullamarine at: ils deta tact Con sherrie.mcdonald@heartkids. Kerry Sluggett (03) 5523 2503 Lynette McCoullough s.org.au rtkid .hea www org.au 0418 312 320 (03) 9333 1586 www.sads.org.au or .au .net tt@iinet lynette.mccoullough@heartkids. kslugge www.sads.org.uk/ UPS GRO SPECIAL INTEREST Goulburn Valley org.au CARDIOMYOPATHY ASSN of Cheryl Alexander BEREAVED FAMILIES EMAIL Wantirna AUST. (03) 5825 4005 SUPPORT Amanda Reed Website: www.cmaa.org.au/ .com ond rg/ bigp pe.o x70@ f-ho zale rts-o che m hea http://www. miranda_thanks@yahoo.co MUSLIM FAMILIES support/bereavment/intro.htm South Gippsland Janita Felici (03) 8812 2231 Lucy (Fatima) Hussain Kerrie Disney (03) 5182 5531 janitafelici@gmail.com HEART TRANSPLANTS 0430 738 820 0409 950 608 Belinda Holden 0400 714 182 .au com MULTIPLE BIRTHS tpg. urme2@ PACEMAKERS REGIONAL BRANCHES VIC il Schubert (02) 6056 6448 Apr 4 Stawell Mandy Tichelaar (03) 9728-698 nga 0407 551 967 Albury/Wodo Leanne Amarant 22q11 l_peter@internode.on.net apri April Schubert (02) 6056 6448 (03) 5358 2945 or 0419 864 412 Audrey Cater (03) 9394 7965 om 0407 551 967 ail.c hotm leanneamarant@ 0420 500 905 april_peter@internode.on.net audrey.cater@bigpond.com

Bayside HeartKids Messagebank (03) 9513 9030 lynette.mccoullough@heartkids. org.au East Bentleigh Maggie Stavrou (03) 9563 7133 maggiestavrou@live.com.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

Ballarat Naomi Keath (03) 5332 3679 0408 559 535 mysissa03@yahoo.com.au

Wonthaggi Cath Methven 0429 325 643 catmet73@gmail.com

2011-2012 Summer HeartKids Victoria-Tasmania Magazine  

Magazine for families and friends of HeartKids Victoria-Tasmania

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