2011-2012 Summer HeartKids Victoria-Tasmania Magazine

VICTORIA

support • awareness • research • advocacy * Celebrating 2011

Quarterly Newsletter for Victoria and TasmaniaSummer 2011-2012 Volume 21 Issue 4

* Awareness Month in February * New RCH now open

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

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

reprinted with an acknowledgement to HeartKids Victoria.

Please note that articles published in this newsletter do not imply

endorsement and may not reflect overall views of HeartKids Victoria.

Also note that the opinions expressed in child stories represent

personal experiences and that medical details are specific to each

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

other details may differ. Parents requiring more specific information

should check with their child’s cardiologist.

Matters of the Heart - Chief Executive OfficerI 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 [email protected] 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,- advise if you would like to receive the newsletter electronically rather than receiving a printed copy,

- the 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,

- name, gender and date of birth of any siblings of your heart child or heart angel, and

- whether 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

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 [email protected]

* Support Manager Tracy Stanley 0478 091 773 [email protected]

* Family Support Coordinators Sherrie McDonald [email protected] Amy Heafield [email protected]

* Support Events Coordinator Lynette McCoullough [email protected]

* Administration Assistant Amy Emmett [email protected]

* Membership/Newsletter Coordinator Margaret Patullo [email protected]

* Newsletter [email protected]

Front cover: Our Support Manager Tracy Stanley and Family Support Coordinator Sherrie McDonald on the Koala Ward at the new Royal Children’s HospitalThanks to all who sent photos and information for this edition.Contributions are always welcome - send to: [email protected] to Fuji Xerox and Documents On Call for printing our newsletters.Thanks to Gordon Patullo for post processing of some digital images.

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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 [email protected] 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.

Tasmania Car & Bike Show - Sunday 5th February

See page 4 for details.

Deniliquin Family CampDates: 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.

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 [email protected]

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

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

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 School12-13 Christmas Celebrations14-15 Kiwanis Camp & Other Family Days 17 Reflections 18 Cuppa For HeartKids & Fun Events19-22 Donations and Fundraising 23 Become Involved with HeartKids 24 Diary Dates

Coming Events

Coming Soon at MonashBeginning 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.

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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Heart Families Supporting Each Other

News from Tasmania

Recent EventsThe 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

Josh recovering after surgery, and with his brother Ashley

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

HeartKids Tasmania Car & Bike Show - Sunday 5th February 2012Venue: Josef Chromy Wines in Relbia, near Launceston

Time: Gates open at 9.30am for the general public. Entry: $5 for Adults, Children are free.

After the great success of the first Tassie Car and Bike Show in 2011, it’s on again! There will be entertainment for the whole family

such as craft stalls, food vans, live bands, loads of kids entertainment including a mechanical surfboard, mechanical bull, face

painting, jumping castle, Star Wars Storm Troopers, model boats on the lake and so much more. For the adults we have local beer and

wine and wood fired pizzas, not to mention some really, really nice cars and bikes from all over Tasmania and the rest of Australia.

This event is being hosted by Aussiecoupes.net, with proceeds going to HeartKids. Enquiries to Kylie: [email protected]

http://www.everydayhero.com.au/HeartKids_Tasmania_Car_and_Bike_Show

Josh Smith is one of the many Tasmanian heart children who travel to Melbourne for surgery at the

Royal Children’s Hospital. He is pictured here after recent surgery to have his pulmonary valve replaced.

Josh’s mother Kylie Smith is the Launceston Branch

Coordinator and she would like to say a big thank you to

Angie Donohue for taking over that role while they were in

Melbourne.

Kylie also sends special thanks to Pete and Carol Bosmans,

with heart child Shanise, who were a huge support to the

Smith family during their stay in Melbourne.

Angie volunteering at

the Celebrity Golf Day

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

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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 an-other operation at five.

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 pres-ents 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 Nel-son Alexander Charitable Foundation by nominating HeartKids as the charity to benefit from their Founda-tion 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.

Eve’s Story

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.

Thanks to Nelson AlexanderNelson Alexander’s Foundation Day auctions were held on Saturday 27 August 2011 raising an amazing $130,306 – their highest figure yet! The big-hearted agents at Nelson Alexander Real Estate, Northcote auctioned a property at 14 Shaftesbury Parade in Thornbury with the full commission of $8,168 donated to HeartKids Victoria. We would like to take this opportunity to thank Nelson Alexander for their wonderful generosity and ongoing support.

Eve Alexiadis, represented her Dad, Tom Alexiadis of Nelson Alexander when presenting a cheque to Terry Hopkins together with Jo Xerri, Cardiac Ward Clerk at the Royal Children’s Hospital.

Here’s Eve visiting a family in the Cardiac Ward on Christmas Eve 2011

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One of the strengths of MonashHeart, Southern Health, is its provision of heart services across the whole age span – from pre birth when the baby is still in the womb, through to newborn, paediatric, adolescent and adult services. Our paediatric cardiologists and adult cardiologists work together, often closely, to provide care to patients of all ages, learning from 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 heart. Our other two cardiac cath labs are dedicated to fixing ‘plumbing’ problems of the heart, such as heart attack.

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 he helps with cases from time to time. Jeff is a very experienced, skilled and well respected adult electrophysiologist, but he also frequently performs cardiac rhythm procedures on teenagers at MonashHeart. 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.

Patients have historically been monitored overnight in the cardiac care unit but, with a new cardiac monitoring system about to be installed in the paediatric wards at Monash Medical Centre, paediatric patients with heart rhythm problems will, in the near future, be cared for on both of the paediatric wards – a more appropriate environment particularly for young children.

Dr Andrew Davis performs procedures at MonashHeart

Procedures include:

• 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.

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

MonashHeart News

MonashHeart submission for Heart Kids Victoria November 2011 newsletter.




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

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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

All ward, ICU and outpatient families

are welcome to join us for morning tea

every Thursday from 10:30am - 12:00pm

in the Parent Lounge on the 3rd Floor.

We look forward to seeing you there!

The Royal Opening of 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 full-swing. 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 RCHSince 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.

Patients Move Into The New Royal Children’s Hospital

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 7

RCH News

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

Home INR monitoring program

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.

First Place: Johann Brink, Senior Fellow Cardiac SurgerySecond Place: Suzanna Kralevski, Cardiac Surgery ManagerEqual Third Place: Margaret Sullivan, nurse; Alison Horton, perfusionist; and Ben Turner, anaesthetistFourth Place: Christian Brizard, Director Cardiac Surgery

Cardiac Surgery takes the cake

This article was written by RCH Corporate Communications

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.

Above top: Stephanie Alexander judging the entries; Above: winner Johann Brink with

Stephanie Alexander and his winning pavlova and trophy

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The hospital space is a learning placeIt has been an exciting time with the new Royal Children’s Hospital Melbourne (RCH) opening in late November and whilst

hospitals were once traditionally seen as places only for clinical care, they’re now well recognised as places rich in learning.

Glenda Strong has been the Executive Director of the RCH Education Institute for the past three years and during that time

Glenda has seen big changes in terms of the importance placed on continuing children and young people’s education whilst

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

support team, and learn practical strategies to assist

children’s learning whilst managing a health condition.

Glenda says it’s the little things that can mean children and young people stay engaged in learning.

“Families play a key role in children’s learning and development. Even if children are unable to attend school due to their health

condition, there are many simple, everyday ways to continue their learning, and the RCH Education Institute is here to support

parents in doing this.”

If you are interested in attending Parent Information Sessions in the new year, please email your contact details including email

address to [email protected]

For more information on the RCH Education Institute visit http://www.rch.org.au/education

Introducing Mikaela: RCH teacher profileMikaela Little is excited about the move to the new RCH following its official opening where she was lucky enough to be

introduced to Her Majesty the Queen, on what Mikaela describes as “a day I’ll never forget.”

Mikaela is one of the RCH Education Institute teachers who will work with children and young people in the Koala Ward

(specialising in cardiology, cardiac surgery and nephrology) at the new RCH.

Mikaela has been with the RCH Education Institute for twelve months and, whilst trained in visual art and media studies, Mikaela

has a strong interest in technology, particularly iPads.

“iPads are a great tool for learning because they’re fun and easy to use, especially for young learners with limited mobility. As a

teacher, the iPad Apps help me get a feel for where a student is at in terms of their learning, so I can adapt to each child’s needs

and take them to the next level”.

Extending learning beyond the bedside is an approach that Mikaela likes to try with young learners when possible.

“As a teacher at the RCH, we must be flexible and find innovative ways to facilitate learning. The spaces and features of the new

hospital will help me do this, and I can’t wait to share it with children and young people in the Koala Ward.”

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

RCH Education Institute

A young learner participates in a filmmaking workshop

Thanks to the RCH Education Institute for providing this article 9

Natalie ScaneNatalie was born on the 11th of November 1990. She was a strong and healthy baby however at

the age of 2 years and 5 months our world turned upside down. She had been unwell for a few

weeks and one morning she could hardly stand up and was turning blue around the lips. She

ended up in Box Hill Hospital where she was stabilized and then sent to the Royal Children’s

Hospital. She was diagnosed with viral myocarditis and put on life support in lntensive Care.

Her heart was very enlarged and was barely functioning due to being attacked by a virus.

Although the outlook was uncertain we were lucky. After 5 days in intensive care her condition

improved enough to move her to the cardiac ward. We had been told when she was first

admitted that she might not make it and if she did she would probably be in hospital for

several weeks as she was so sick. Miraculously she improved enough after 2 weeks in the

cardiac ward to be allowed to go home. Natalie was treated for 12 months with the same

medication as heart transplant patients and so attended the hospital regularly. She continued

to return for checkups and tests until her last appointment at 18. Although she had many

admissions to hospital for other illnesses she required no further treatments for her heart.

Natalie completed Year 12 and studied Visual Arts for two years at Swinburne. She now works

in the hospitality industry and is currently living in Noosa. She is active and healthy and enjoys

playing sport, being with her friends and most of all spending time at the beach. As she

reaches her 21st birthday we know that we are blessed to have her and she has grown up

knowing how important good health is and the importance of living every day to the fullest.

Celebrations!

Jessica CurgenvenJessica 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.

William ArrowsmithAfter 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.

Ben RethusHi, 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!!!

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Congratulations!

New BabiesCongratulations and our very best wishes to all these

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.

Ayesha and Rafe Horsington have announced the arrival of their baby HK Clancy, born 6th July.

A little sister for Saxon and Layla.

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.

Heath & Jessica Shakespeare and big sister Ava have announced that their baby boy HK Austin

arrived on the 1st September.

Todd & Catherine Newman & big sister Phoebe welcomed their baby girl HK Eliza Catherine on 23rd September

....everyone’s fighter!

The Reilly/Smith family have announced the arrival of HK Nate, born 28th September.

Congratulations to Paul, Marnie and big sister Ella.

Matthew & Suzanne Hall have welcomed the arrival of their son HK Samuel on 8th October.

He is a brother for Hannah.

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

Richard Lennon & Claire Sluyters-Lennon have a new baby boy HK George, born 20th October.

Baby brother for Charlie and Alice.

Peter & Judith Harvey have announced the arrival of HK Zoe on 22nd October. Zoe is a baby sister

to Alex, Emily and Jake.

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.

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.

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

If you have a new addition to your family (heart child or sibling) and would like the baby’s birth announced in the

newsletter, please send us the details.

Happy Birthday!A very ‘Happy Birthday’ to all the heart children and their family members celebrating birthdays during Summer!

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.

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.

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.

Here are some suggestions for helping the transition to school:

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:

• 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.

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.

Starting School

2012 Photo Request!If your heart child is starting day care, kinder or school, or moving on to secondary or tertiary studies, please send us a photo for printing in the newsletter. Write a brief paragraph telling us of their achievements and remember that high resolution photos print well.

11

Christmas ....

Geelong Christmas Party

Melbourne Christmas PartyOn 26th November HeartKids held a Christmas party at the Melbourne Zoo. Unfortunately the weather was very wet but around 600

people attended. Families enjoyed four hours of party fun, including face painting, caricature drawings, animal drawings, cup cake

decorating, party games, a fairy show, a magic show, music and animal characters, raffle and of course, the very important, Santa.

Many thanks to all the entertainers who attended the party. Many of them donated their time and we are grateful for their

generosity. We were lucky to have the help of many volunteers – without their help, the party would not have worked so well. A

big thank you to all our volunteers who helped on the day. We thank the Melbourne Zoo for having us each year – this is our fourth

annual party there and we appreciate the Zoo staff being very welcoming.

Special thanks to:

Lord Mayors Charitable Foundation, Youth in Philanthropy Retail Food Group Zoos Victoria Division 6 Kiwanis

Roar (City Life Church) George Haddon Luke Watson Levent Efe Craig Hilton

Jock Macneish Sonya Leonello Paul Harvey Alan Rose Marco the Magnificent

Victoria Witter and David Witter Santa (TSS, Westaff) Warren Smith from Magical Mountains Laura Pike

Fairy Abby and Wizard Herman Ffyona and the team from ‘Pass the Parcel’

We appreciate donations from:

Cotton On Foundation Tomy Australia Pty Ltd Lego Australia Pty Ltd Mattell Crown Melbourne

Green Hat Workshop Danoz Direct Brand Developers First Choice Liquor Mornington

Educational Colours Pty Ltd Blush Photography Deebee Bags First Avenue Collection (Jeannette Berry)

Kookaburra Sport Pty Ltd Salton (Aust) Pty Ltd Diana Ferrari Sara McDonald, Avon Consultant

Bakers Delight, Beaumaris Global Shop Direct Five Mile Press Holdmetight Shapewear RACV

Bochetta Plush Toys Pty Ltd Lawrencia Cycles Lombards The Paper People – Moorabbin and Keilor Park

Village Road Show Corporation United Bonded Korimco Lyndsey Crowhurst and Helen Sibbison, Channel 7

Ashdene Manufacturing Rebel Sports Stefanie Sonnleitner (Sales Executive – Kerri-Anne), Channel 9

Thanks to the HeartKids Christmas Party Committee: Kathy Petras, Shane Larsen, Anna Domine, Margaret Patullo, Amy Emmett,

Noel Scott, Natalie Palmer, Tracy Stanley, Terry Hopkins, Lynette McCoullough and to the raffle sub-committee, Jodie Grocock and

Justine Franklin.

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.

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

12

.... Celebrations

Melbourne Christmas Party

13

Family Fun

FunFlight 2011

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

Weekend Camp in September, thanks to Kiwanis

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.

World Record Attempt

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!

Photos kindly supplied by Kim Selby Photography14

Box Hill Miniature Trains

Kiwanis Sponsored Family Outings

Myuna Farm Day

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

Heartfelt thanks to the Sunbury Kiwanis Club who sponsored our

wonderful day out at Myuna Farm on 6th November.

15

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 Heart Disease Education Seminar and was most impressed with their obvious dedication and commitment to this organisation. The whole conference and the education seminar was a huge success from the feedback we received, with over 90% of people rating their overall impression as very good to excellent.

The Education Seminar was attended by 150 people and it was great to see so many parents (and their kids!) there as well. The vast majority of attendees believed that the content was relevant as well as the overall experience being good value for money. Now we have the experience, it is intended that we will run another education day next year.

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 the States for their local efforts as well as the ‘back office’ help of Chami, Linda and Soula. There were over 380 registrations completed in October but we anticipate that before the campaign is over this number will exceed 400.

One of our major sponsors, Pasta Master (General Mills) ran a team building challenge for their employees in Victoria – to build a bike from scratch, donating the finished bikes to needy Heartkids.

Looking forward, there are exciting times ahead with Teen Camp being held in Sydney as well as our CHD Awareness Month Campaign to be implemented during the month of February – did you know that February 14th was National CHD Awareness Day? We have a number of events planned with our major sponsor, the Retail Food Group (Michel’s Patisserie, Brumbies and Donut King) as well as a photographic competition run through Facebook - Capture a Heart.

Alan Bowden Interim CEO HeartKids Australia

PHOTO

45%

46%

9%

What was your overall impression of the seminar?

Excellent Very Good Good

PHOTO

NEWSLETTER

HeartKids Australia News

First of all a BIG thank you to everyone at HeartKids who have made we especially welcome since I took over from Neil in September. I was fortunate to meet many of the FSC’s at the National Conference and Education Day and was most impressed with their obvious dedication and commitment to this organisation. The whole conference and the education day was a huge success from

the feedback we received with over 90% of people rating their overall impression as very good to excellent. The Education Day was attended by 150 people and it was great to see so many parents (and their kids!) there as well. The vast majority of attendees believed that the content was relevant as well as the overall experience being

good value for money. Now we have the experience, it is intended that we will run another education day next year.

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 the States for their local efforts as well as the ‘back office’ help of Chami, Linda and Soula. There were over 380 registrations completed in October but we anticipate that before the campaign is over this number will exceed 400.

One of major sponsors, Pasta Master (General Mills) ran a team building challenge for their employees in Victoria – build a bike from scratch, donating the finished bikes to needy Heartkids. The lucky recipients were: Caleb Cobb (Tasmania), Noah De Sousa (NSW) Jai Upkett (NT), Tamia Bowman (SA) , Kyneisha Grace (Qld), Adrienne D’Amonte (WA) and Jesse Fry from Victoria (pictured)

PHOTO

45%

46%

9%

What was your overall impression of the seminar?

Excellent Very Good Good

PHOTO

NEWSLETTER


First of all a BIG thank you to everyone at HeartKids who have made we especially welcome since I took over from Neil in September. I was fortunate to meet many of the FSC’s at the National Conference and Education Day and was most impressed with their obvious dedication and commitment to this organisation. The whole conference and the education day was a huge success from

the feedback we received with over 90% of people rating their overall impression as very good to excellent. The Education Day was attended by 150 people and it was great to see so many parents (and their kids!) there as well. The vast majority of attendees believed that the content was relevant as well as the overall experience being

good value for money. Now we have the experience, it is intended that we will run another education day next year.

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 the States for their local efforts as well as the ‘back office’ help of Chami, Linda and Soula. There were over 380 registrations completed in October but we anticipate that before the campaign is over this number will exceed 400.

One of major sponsors, Pasta Master (General Mills) ran a team building challenge for their employees in Victoria – build a bike from scratch, donating the finished bikes to needy Heartkids. The lucky recipients were: Caleb Cobb (Tasmania), Noah De Sousa (NSW) Jai Upkett (NT), Tamia Bowman (SA) , Kyneisha Grace (Qld), Adrienne D’Amonte (WA) and Jesse Fry from Victoria (pictured)

HeartKidsDiamond PendantJMS Diamonds is proud to announce

the launch of the beautiful

HeartKids Diamond Pendant.

Skillfully handcrafted locally in

Melbourne from 18 ct white gold, the

beautiful pendant is valued at $5,200.

In this special offer, only available to

HeartKids supporters, JMS Diamonds

is offering this high quality piece,

including a fine quality Italian made

neck chain, for $3,450 (inc).

This gorgeous pendant also comes

with an optional HeartKids logo

engraved on the back of the heart.

$500 from each pendant purchase

will go to HeartKids Victoria. JMS

Diamonds is happy to provide a

valuation certificate. All enquiries can

be directed to Jason at:

JMS Diamonds on (03) 9654 8485.

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


‘My Little Red Head’Avelynn’s story has touched the hearts of many others who too are struggling to cope with their child’s chronic illness.

This story shows you it is possible to overcome

life’s challenges and to live an inspirational life. It is a triumph of the human spirit which can endure incredible odds and overcome adversity.

Copies of this book, which can be ordered through HeartKids, cost $19.99 (plus postage & handling).

$5 per copy donated to HeartKids.

cover design notesTitle: My Little Red Hesubtitle: The extraordtrim size: 150mm x 23page count: [to followthickness: [to follow]author’s website: httpinside cover blurbs: Hforward by: A Prof ChChildren's Hospital; opublisher: Woodduck printers: McPhersonsprinters’ web site: httpISBN: [to follow]title color: redsubtitle color: blue (toOther: baby pix on baWoodduck logo on ba

MY LITTLE RED HEADThe Extraordinary, True, Amazing, &

Amusing Story of How Avelynn Survived Heart Disease

Michelle Wood

With a special foreword by World Renowned Heart Surgeon Prof Christian Brizard, MS, MD

MY LITTLE RED

HEA

D Michelle W

ood[ISBN barcode to follow]Published by:

Woodduck Press[postal address to follow]Melbourne, Australia

Note: spine width will be narrower than shown. Spine width will depend on final page count and paper selection.

BIOGRAPHY & AUTOBIOGRAPHY / Personal Memoirs

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

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

Number of Cuppa for HeartKids events held per State, as at mid October

16

Heart Angel Remembrance

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

Birth Dates Paul Livingstone 2nd December 1981Jaime Ekberg 19th December 2005

Kristiana Thomaidis 20th December 2004James Kelleher 21st December 1991

Lucas Stone 23rd December 2009Jonathan McGrath 29th December 2007

Ethan Hanley 16th January 2002Heidi Hansen 30th January 2007Amy Dawson 11th February 2010Andrew Lillis 13th February 2004Max Barker 21st February 2008

Stephen Buckman 26th February 1991

Anniversary DatesZach Beadel 29th November 2010Jesse Cotter 1st December 2008

Jackson Walsh 28th December 2009Frank Desensi 29th December 2009

Oscar Batrouney 30th December 2009Matthew Moran 15th January 2005

Heidi Hansen 30th January 2007Lucas Stone 31st January 2010

Georgia Morrison 17th February 2000Andrew Lillis 19th February 2004

Mary O’Keefe 22nd February 2006Kristiana Thomaidis 28th February 2009

Grief and Bereavement Support Services

A variety of support services is available in the

community for bereaved families.

A list of organisations and websites can be found on

our HeartKids website at www.heartkidsvic.org.au

Click on the tab ‘Links’, then scroll down through the

links to the various sites.

Heart Angels

Asha McNamara16.05.2011 - 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 spiritAnd in turn they touch your soul with their heart~

(Unknown Author)

Reflections

Remembering Jacqui JohnsonHeartKids 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 GoneYou can shed tears that she is gone

Or you can smile because she has livedYou can close your eyes and pray that she will come backOr you can open your eyes and see all that she has left

Your heart can be empty because you can’t see herOr you can be full of the love that you shared

You can turn your back on tomorrow and live yesterdayOr you can be happy for tomorrow because of yesterday

You can remember her and only that she is goneOr 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

Thinking of YouOur thoughts and prayers are

with the families and friends of all Heart Angels in their time of loss.

17

The Wonthaggi group arranged a Cuppa for

HeartKids fundraising event on Monday 26th September

at The Fun Shed, Cowes

Play GroupHeartKids Victoria will commence a weekly playgroup in Buncle Street, North Melbourne shortly. We will meet from 12:15pm – 2:15pm on Fridays for children aged 0-5 years. We will be joined occasionally by NG Tube Kids. Please register your interest in attending by emailing [email protected] you are interested in volunteering to help run the playgroup please send an expression of interest to the above email address.

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.

Pakenham’s October Coffee Morning

The Bendigo Branch held a Picnic in

the Park on Sunday 11th December

to celebrate Christmas.

As this was the last function for Kym

Fitzgerald in the role of Branch Coordinator,

we say a sincere Thank You and Farewell.

We are pleased to welcome Natasha

Prendergast who has taken over the role.

Cuppa For HeartKidsDuring 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.

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.

HeartKids Fun Events

18

Wonderful support!

Melbourne Heart Soccer 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.

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.

Baby ScalesThe Walsh family made

a gift in memory of

their heart angel Jackson in honour of

his second birthday.

Their generous donation was used

to purchase 12 sets

of scales for the Koala Ward.

Finnan’s Gift to The RCHA remarkable achievement in fundraising was honoured on 20th October 2011 at The Royal Children’s Hospital, as Alisa Camplin and Oliver Warner unveiled the $300,000 state-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 donate $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.

Christmas Stockings

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

VADHeartKids Victoria funded

the production of the “Long-

term ventricular assist device

(VAD) information booklet for

patients and families”.

A VAD is a ventricular assist

device that can support

the heart. It is designed to

provide long-term support

for children whose hearts are

too damaged or diseased to

provide enough blood flow.

19

Acknowledging....

Happy Birthday Erin!

Thanks for supporting

HeartKids Erin, as you celebrated your 30th birthday!

Footy Colours DayHere’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.

Kiwanis DonationTerry Hopkins accepts a cheque for $30,000 from Ted Kitto and Phil Riggio of Kiwanis on behalf of HeartKids Australia.

The donation will be spread across all of the HeartKids State organisations.

MSE EventsSarah Livingstone of MSE Events presenting Terry

Hopkins, CEO of HeartKids Victoria, with a cheque

for $2,125 raised at their Brownlow Medal Calcutta

held at the MCG to raise money for charity.

Biggin & Scott PresentationPaul Stoner, Russell Cambridge and Michelle Page from Biggin & Scott presented a cheque for $8,400 to Terry Hopkins - the commission from the sale of Polly & Waz’s house on The Block.

Lord Mayor’s Charitable

FoundationHere’s a photo of the St Michael’s Grammar students with

Terry Hopkins, HK Vic CEO (centre) & Tracy Stanley, Support

Manager, (left) at the Lord Mayor’s Charitable Foundation

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.

20

....Special Efforts!

Inaugural City2SeaThe inaugural Sunday Age City2Sea presented by Westpac was held on Sunday 13 November, 2011. The run started at the Arts Centre and travelled along a scenic 14km route to a spectacular finish by the sea in St Kilda.

13,000 people participated and raised more than $430,000 for charity. Seven teams supported HeartKids Victoria raising $18,545.10. We would like to acknowledge the special effort of the McNamara family who amassed an amazing $17,680.10 in memory of their daughter Asha - they were the second highest individual fundraisers for the event.

Broadmeadows Car & Bike ShowThe 3rd Annual Broadmeadows HeartKids Car & Bike Show was held on Sunday 13th November at Penola College.The day was a great success with approximately 300 cars on display, motorbikes, live music, face painting, raffle prizes, giveaways and kids entertainment.With the help of generous local businesses, display vehicles, gate entry, raffle tickets, and sales of food and drinks, the Car & Bike Show raised $14,742.40, a substantial amount of $7000 above last year’s total.Adam and Luisa Michielin would like to thank family and friends who helped organise the event and all who helped out on the day, especially the generous sponsors listed below:

R & A Art – Real Estate & general photography Auto One Niddrie Rider Bros123 Jumping Castles Komp Cranes All cars in Scale Coburg Tyre ServiceRotary Club Pascoe Vale C.M.S Meats GL PRO sound Hella’s PrintingCrivelli Coffee Penola Catholic College Add Air Conditioning P/L Harley HeavenD’Aprano Real Estate Jaded Cats (live band) Fastflex Heating and Cooling Ron Mac Panels Airport West Motors Bombers Auto Port Autotech tools Britannia Paving A grade Memorabilia Ansett Flight Simulators Pireaus Blues Restaurant Batman Café

Adam and Luisa said, “As parents of a heart kid, it’s great that we can raise funds for such a worthy cause. With more sponsors already promised for next year, we are hoping for another successful event in 2012.”

Photos left to right: Terry Hopkins, HeartKids CEO, presenting trophies to proud recipients; HK Julian Michielin and his cousin Lucas enjoying the Car & Bike show; Julian’s sister Carla and cousins enjoying the face painting; An aerial shot of the Car & Bike Show.

21

Adoring ALAitken CollegeJane AlisAPV EngineeringJo ArrowsmithBiggin & ScottBillanook CollegeWayne BowdenBusiness Consultants Pty LtdErin CaseyShae CaterErin CervelliTung ChauClayton AustraliaJulie-anne CompstonJulie CotterCountry Womens Association (Murulla)Craig & StaceyNicole CrewPaul & Nicole CrewGemma CuclahanMarion CuclahanJoy CugleySG & ON CurrieDiamond Valley SuperulesDingley InternationalCathy Drew

Jamie A DunneEast Devonport FellowshipEssendon Superules IncShanti FaganKevin & Beryl FeatherstonRicky & Jo FinBrian FinnFlavours CaféMaddy FlorescuIan & Judy FoleyKirsty FoleyFreemasons VictoriaGirton Grammar School LtdLP & NO GrovesMaria GruberHeartbeat Galen Social ClubHighvale Secondary CollegeSherrie IrwinAshutosh KapseKiwanis AustraliaKiwanis Club of Shepparton - SunrisersKnox TavernCon KonstantinouLa Cacciatore Lions Club of Melbourne MarketsLittle Tinkers

Bill MackayChristine MannixMegan MarshallPJ & BM MaskreyJustin McCarthyAsha McNamara Memorial DonationsMelbourne HeartMelbourne Storm Morwell Neighbourhood HouseMSE Events GroupPat MurnaneR/D MuroneyNelson Alexander Charitable FoundationNorth Essendon Physio ClinicNorthern Motor GroupPapa Gino’sDawn & Kevin ParkerRhonda RattrayRegina ReidMrs RobertsB&V RobinsonCayley RobinsonDonna RosentengelPE & DI Russell

Don & Alison ScottErin ScottNoel ScottJ SkeenPaul SorgiovanniSouth Croydon Vets Football ClubSt Catherine’s SchoolSt Kevins Primary School, TemplestowePeter TangTelopea Park SchoolTina TerrillBronwyn ThomasFr Donald ThomasTucker Road Bentleigh Primary SchoolVariety VictoriaVCAT Heidi VickersPl & SI WaddellEmma WalshBarbara WandochKiara Ward Memorial DonationsWarrandyte Lions Club IncMichael WarrenA & A Young

Thank you for your recent gifts...

Fontan RegistryThe 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 Princess 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 improve treatment options and long-term health outcomes for patients. It is believed there are around 1000 adults and children living in Australia 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: [email protected] T: +61 431 659 911 W: www.fontanregistry.comor contact us at HeartKids and we will send you an information flyer.

Sharpie’s Charity ChallengeIn 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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Yes! I’d like to be involved with HeartKids Victoria...

HeartKids Victoria is a registered charity and our services rely heavily on the wider community to be volunteers, sponsors and donors.

Tax deductible donations can be made securely on our website www.heartkidsvic.org.au or forwarded directly to HeartKids Victoria.

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

p Becoming a Member (Membership is free)

p Becoming a Volunteer

pParticipating in fundraising & awareness

p Business sponsorship

p Making a regular gift through my bank

p Leaving a gift in my will

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

Donations of $2 and over are tax deductible

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

p Cheque p Money Order - payable to HeartKids Victoria

p Visa p Mastercard

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

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

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

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

p I would like to make ongoing donations to HeartKids Please automatically debit my credit card: Amount $.................................

p Monthly p Quarterly p Yearly I hereby authorise HeartKids to deduct these funds from the credit

card detailed on this form until further notice.

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

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

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

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

Heart Child’s Name (if applicable): ........... ............. Relationship to child: ..............

Please be assured your details remain strictly confidential. If you do not wish to receive any further information from HeartKids Vic, please tick this box p

Sponsors and SupportersNational:

State:

23

VICTORIA

MELBOURNE METRO

BRANCHES

Bayside HeartKids Messagebank

(03) 9513 9030 lynette.mccoullough@heartkids.

org.au

East Bentleigh Maggie Stavrou (03) 9563 7133

[email protected]

Dandenong Lucy (Fatima) Hussain

0430 738 820

Mornington Peninsula

Irene Day (03) 5979 4918

0413 299 209 [email protected]

Pakenham Joanne Arrowsmith

(03) 5967 7083

[email protected].

Point Cook Audrey Cater (03) 9394 7965


Tullamarine Lynette McCoullough

(03) 9333 1586 lynette.mccoullough@heartkids.

org.au

Wantirna Amanda Reed [email protected]

Janita Felici (03) 8812 2231

[email protected]

REGIONAL BRANCHES VIC

Albury/Wodonga April Schubert (02) 6056 6448


Bairnsdale Caroline Foard 0438 928 821

[email protected]

Ballarat Naomi Keath (03) 5332 3679


Bendigo Natasha Prendergast

(03) 5441 8262 or 0421 590 169

[email protected]

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

Geelong Libby Gibson (03) 5250 2439


Horsham Gaynor Baker (03) 5384 2280

[email protected]

Latrobe Valley Sophie Werner 0427 955 453

[email protected]

Portland Kerry Sluggett (03) 5523 2503


Goulburn Valley Cheryl Alexander (03) 5825 4005 [email protected]

South Gippsland Kerrie Disney (03) 5182 5531


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

[email protected]

Wangaratta Karyn Howard 0412 988 285

[email protected]

Wonthaggi Cath Methven 0429 325 643 [email protected]

TASMANIA

Burnie Amanda Riley 0448 330 611

[email protected]

Gail McFarlane (03) 6433 1274


Hobart Paul Hyland (03) 6247 8435


Launceston Kylie Smith (03) 6393 6240


INTERSTATEContact details at: www.heartkids.org.au

SPECIAL INTEREST GROUPS

BEREAVED FAMILIES EMAIL

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

support/bereavment/intro.htm

HEART TRANSPLANTS

Belinda Holden 0400 714 182

PACEMAKERS Mandy Tichelaar (03) 9728-6984

22q11 Audrey Cater (03) 9394 7965


EBSTEIN’S ANOMALY

Kathy Sims (03) 5831 1110

[email protected]

OVER 18’s Erin Cervelli (03) 9513 9030

KAWASAKI DISEASE

Shirley Mates (03) 9894 1257

[email protected]

Website: www.kdfoundation.

org.au

KABUKI SYNDROME

Stacey McKiernan

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

HYPOPLASTIC LEFT HEART

SYNDROME & SIMILAR CONDITIONS

www.hearts-of-hope.org

Leanne Amarant (Victoria)

(03) 5358 2945 [email protected]

Csaba Ovari (Tasmania)

(03) 6229 8169 [email protected]

LONG QT SYNDROME (LQTS)

Sherrie McDonald 0431 544 510

sherrie.mcdonald@heartkids.

org.au www.sads.org.au or

www.sads.org.uk/

CARDIOMYOPATHY ASSN of

AUST. Website: www.cmaa.org.au/

MUSLIM FAMILIES

Lucy (Fatima) Hussain

0430 738 820

MULTIPLE BIRTHS

April Schubert (02) 6056 6448


Contact Details

Diary Dates

Month of February - HeartKids Awareness

5 February 2012 - Tassie Car & Bike Show

Friday March 9 to Sunday 11 - Deni Camp

Friday 23 March 2012 - Daniel Reddie

Foundation Charity Benefit

Sunday 25 March - Shepparton Picnic Day

1 April - Run For The Kids (entries open 1 Feb)

Friday 6 April 2012 - Good Friday Appeal

Saturday 14 April - Hoffy’s Challenge

Friday 25 May - HeartKids Spectacular

15 July - Run Melbourne (entries open now)

For more about these events check inside or

go to www.heartkidsvic.org.au

ARN: A0021470B ABN: 16 336 986 918

HeartKids is an Auxiliary of The Royal Children’s Hospital,

Melbourne, Australia

HeartKids VictoriaCONTACT USPO Box 803 Parkville Victoria 3052P: (03) 9329 0446F: (03) 9329 0446E: [email protected] Facebook: HeartKids Victoria (including Tasmania)

VISIT USSuite 310 / 55 Flemington Road North Melbourne 3051www.heartkidsvic.org.au

2011-2012 Summer HeartKids Victoria-Tasmania Magazine

Documents

Transcript of 2011-2012 Summer HeartKids Victoria-Tasmania Magazine