Hands Up for Our Children: Spring 2017

HANDS UP FOR

Our Children STORIES FROM THE RCH RCH FOUNDATION NEWSLETTER

ISSUE 8: SPRING 2017

Kyle at the RCH

MEET KYLE Kyle Bozanic is a pretty standard 12 year old. Sport mad and willing to give anything a go, Kyle like most other kids his age, also uses technology to communicate. The difference is that Kyle controls his device with his eyes.

Arriving as a new sibling for his brother Ryan, parents Kylie and Frank had no way of knowing how scary the birth of their second child and the weeks which followed would be. Mid-delivery, Kyle had a

heart attack. Medical teams worked quickly, and soon he was intubated and transferred to intensive care.

“It was the scariest thing that I’ve ever been through in my life, but we all stuck together and made it through,”said mum Kylie. >> STORY CONTINUED ON PAGE 4

Sue Hunt with RCH patient Lily who features in The Impact of Giving

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Welcome to the Spring edition of Hands up for Our Children.

Over the past year, you have shown incredible support for the RCH. Thanks to you, $53.8 million dollars was raised for our hospital. This money was used to fund over 200 lifesaving and life changing projects across many hospital departments and medical specialisations, supporting our sickest children. On behalf of everyone at the RCH Foundation, thank you for your ongoing commitment and support.

Inside this issue we share how your generous donations are supporting sick children. We introduce you to Kyle who, like any 12 year old, loves sports and using the latest technology to communicate. The only difference is that Kyle controls his device through innovative eye-tracking technology.

We also share the stories of some wonderful supporters.

Following the loss of their son Hamish, the Jenkinson Family are honouring his memory through their fundraising.

For those hospital supporters who wish to leave a gift in their Will, the recently launched 1870 Society acknowledges their generosity now and its impact in the future.

Join the conversation and keep up to date. f RCHMelbourne t RCH_Foundation rch.foundation@rch.org.au 2 rchfoundation.org.au

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One of the most significant groups to impact the hospital are the RCH Auxiliaries. To celebrate their 95th anniversary, we’re sharing interesting facts and stories about the Auxiliaries over the decades.

We also have the joy of introducing you to Edie, whose story we share as part of our Christmas fundraising campaign. Born with her intestines on the outside of her body, Edie‘s strength of spirit is sure to warm your heart.

For more inspiring stories like these, please visit rchfoundation.org.au to read our annual report The Impact of Giving.

All the best to you and your loved ones over the holidays,

Sue Hunt Chief Executive Officer

Thank you to our newsletter sponsors

1 Nursery Avenue, Clayton Business Park Clayton VIC 3168 bluestargroup.com.au

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In Hamish’s honour Brad and Katrina Jenkinson’s guiding force is their son, Hamish. By creating a legacy in his honour, they hope to save other RCH families from the grief they have endured.

Their first child, Hamish was born with a rare genetic condition causing multiple blockages in his bowel. Cared for from birth by accomplished surgeon and researcher, Associate Professor Sebastian King, Hamish underwent two significant surgeries to repair his bowels.

The first was to create a stoma, or opening at the end of his intestine, to allow faeces to bypass the blockages his bowel. Despite A/Professor King’s best efforts, Hamish’s bowel failed to function normally. A second surgery was scheduled weeks later.

“After the surgery, Sebastian came to us with the news that there was nothing else they could do….I can’t explain the emotion we went through the last night we stayed with Hamish. The following day, as the sun shone through our window, Katrina and I cuddled him so tightly as he drifted away to a world where he would be in no more pain, undergo no more surgery and be peaceful. We are left with a pain that never goes away and one we don’t wish upon anyone.”

In spite of their grief, Brad and Katrina participated in Run for the Kids two days later in Hamish’s honour.

“We had 50 of our closest family and friends join our team, named Hammer Time in Hamish’s honour. As hard as it was just a few days after he passed, we did it because Hamish would have wanted us to.”

Run for the Kids has become an annual event for the Jenkinsons. Last year, 75 people joined team Hammer Time including their baby girl, Eva, who was born just one day before Hamish’s first birthday, and two special additions: A/Professor King and his son.

“Sebastian is a beautiful and caring man who we now consider a close friend. We’ve maintained a strong relationship with the hospital and the incredible team of doctors, surgeons, nurses and pastoral care members. They made our experience as comfortable and caring as possible.”

Inspired by A/Professor King’s work, the Jenkinsons have expanded their support of the RCH beyond Hammer Time, fundraising through their business, Holistic Athlete Development, and challenges like Brad’s Ironman training.

They have raised over $13,000 so far.

“My wife and I share a dream that one day, because of medical advancements that are only possible through fundraising, families won’t have to suffer the loss of a child to the same condition we lost our beloved Hamish,” said Brad.

Support the Hammer Time team visit: rchf-fundraising.everydayhero.com/au/hamish-s-cause 3

>> COVER STORY CONTINUED Over a year went by until they realised something else was wrong. Kyle was having problems standing and his communication wasn’t strong. After a series of tests, the family learnt that their young boy would have trouble walking and talking for the rest of his life.

“Kyle was diagnosed with quadriplegia dystonia, which means he has involuntary muscle movements, has trouble communicating and requires walking aids to get around,” said Kylie.

INDEPENDENT INTERNET ACCESS For patients who are quadriplegic, or have limited muscle control in their hands, the Tobii Eye Gaze is a way for them to access social media sites, communicate with their friends as well as engage in educational tasks and group learning opportunities while in hospital.

‘’Imagine being a teenager and having your mum type out or read every message and email that you want to send and receive.

For some of these kids, gaining independence in the way they use the internet and connect with their friends on social media is a really big deal.’’

Natalie Weekley, RCH speech pathologist

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Through spending time at the RCH, Kyle was introduced to the Tobii Eye Gaze device and a range of other communication tools which has allowed this bright young boy to communicate with his family, friends and teachers.

Learn more about the Tobii Eye Gaze, and the difference it’s making at the RCH on the next page.

Communication in sight For many children who have suffered a stroke, brain injury or severe degrees of cerebral palsy, losing the ability to move or talk, but being completely conscious in your surrounds is a reality.

Now, thanks to the generosity of Victorians, a new eye gaze communication device has arrived at the RCH which is revolutionising the way that these patients can communicate, and speech pathologist Natalie Weekley has seen the benefits first hand.

“The Tobii Eye Gaze is an exciting new device which allows non-verbal patients and those with movement disorders to communicate with voice output, use the Internet and complete their school work using eye gaze,’’ said Natalie.

Every day, Natalie and the Speech Pathologists in the Victorian Paediatric Rehabilitation Service (VPRS) and Acute Speech Pathology team work with a range of patients both on wards and in the outpatient clinics who present with an array of communication needs. Often patients may come into the hospital with limited or no communication capacity and their parents will be their only means of communicating.

“The acquisition of a permanent eye gaze device has already made a huge impact on developing patients’ independence, improving their wellbeing while in hospital, and has enabled medical and allied health teams to work more closely with the children,” said Natalie.

SUPPORTED BY SPECSAVERS Specsavers has been supporting the RCH for over four years. With a dedicated community program operating across their stores, giving back to the communities in which they’re located is an integral part of the organisation.

Across Victoria, 23 stores have signed up, with a percentage of every pair of glasses sold supporting the hospital. Each store is passionate about raising funds for the RCH, and have supported many areas of the hospital by doing so, including the Tobii Eye Gaze device.

“At Specsavers, we’re dedicated to improving people’s lives through vision.

When the opportunity came up to sponsor the Tobii Eye Gaze Device we jumped at the chance to empower young people through their eyes.’’

Briony FitzGerald, Specsavers

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INTRODUCING THE

1870 Society Generosity is the cornerstone of the RCH and it has been that way since the very beginning.

In 1870, Doctors Smith and Singleton had a vision “to help sick and injured children” and with the help of a ladies committee, worked to establish the Melbourne Free Hospital for Sick Children. Its aim: to give the best care to sick and injured children free of charge.

That vision of providing children with the best care still exists today, as does the philanthropy needed to support it.

The RCH Foundation recently launched The 1870 Society, to celebrate this history and the generous supporters who have included the RCH Foundation in their Will. Their support has helped the hospital remain true to its vision, ensuring great care for sick children is avaible now and in the future.

“Our passion is to make a difference - we have left a bequest so our support for others’ good work can continue long into the future.”

Robyn and Stewart Anderson, committed bequestors

For more information on The 1870 Society and leaving a gift in Will to the RCH Foundation, please visit rchfoundation.org.au or contact our Bequest team: 03 9345 6389 or giftinwill.foundation@rch.org.au.

A reason to celebrate “I’ve never organised a fundraiser or anything like this, but felt that on my wedding day, I really wanted to say thanks to The Royal Children’s Hospital for helping me get here.”

Jade Larkin’s RCH journey began at a very early age when she was born with congenital heart disease. Undergoing two open heart surgeries by the age of 14, Jade’s condition has had its ups and downs, and she’s grateful to the RCH for the continuous care they provided right up until she graduated to adult health services. To celebrate her wedding, she organised RCH bonbonniere gifts for each of her 90 wedding guests.

“I’m forever thankful for the care and support provided by the hospital. It was great to be able to include the RCH in my wedding,” said Jade.

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Including the hospital in your celebration is a wonderful way to give back and help our sickest and most vulnerable children.

To support the RCH in lieu of gifts at your celebration, contact us: 03 9345 5037 or rch.foundation@rch.org.au.

Celebrating 95 Years In 2017 the RCH Auxiliaries are celebrating 95 years of contributing love, laughter and support to some of Victoria’s sickest children.

Established in 1922, the RCH Auxiliaries are a vibrant and dedicated network of individuals. Made up of 60 Auxiliary groups and around 1,000 volunteers from across Victoria, the RCH Auxiliaries are a fundraising force to be reckoned with.

From Auxiliaries aficionados to complete novices, you might be surprised to learn the following fun facts: • St Kilda is the oldest Auxiliary and has been operating for 95 Years, while Transcend and RCH Volunteers Auxiliary are the newest and were established in 2017 • Dame Elisabeth Murdoch was the first Patron of the RCH Auxiliaries • In 95 years Auxiliaries have raised over $45 million for the hospital • Some Auxiliaries have formed based on location, and others based on a common cause, eg supporting children with cancer, premature babies and those with heart conditions • The very first Auxiliary members supported the hospital by sewing doctors gowns, bed sheets for the patients and running the RCH canteen • Not only have RCH Auxiliaries fundraised for the hospital through stalls at the RCH, the Flower and Garden Show, and within their communities, they also run performances, gala balls, art auctions and days at the polo

Images, clockwise from top: •

Footscray Yarraville Juniors Auxiliary market day stall in Mainstreet 2014

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Christmas toy preparation, 1944

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Made by Us market, Malvern Town Hall, 2012

The RCH Auxiliaries are always looking for new members. To learn more and join, contact the Auxiliaries Team: 03 9345 5037 or auxiliaries.office@rch.org.au.

Your gift makes everything possible Thank you for taking the time to read our newsletter. We hope you feel proud of what you make possible through your continued support. If you have any feedback, please email us at rch.foundation@rch.org.au or call 03 9345 5037.

If you have not supported the RCH Foundation before or you would like to make an additional gift at this time, we sincerely thank you. Please return the donation form on the back of this newsletter or visit rchfoundation.org.au/news.

On behalf of those who will benefit from your kindness and care, our heartfelt thanks.

“It’s a remarkable hospital and the team that looked after Edie will forever be in our hearts and minds. We’re eternally grateful to them” Aimee, mum of RCH patient Edie.

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MEET EDIE Little Edie was born with gastroschisis, a life threatening condition where her intestines were on the outside of her body.

Although Edie is now home and recently celebrated her first birthday, she still needs specialised care. She has a feeding tube and a line through her neck to give her nutrients.

Before her parents could even cuddle her, Edie was rushed to the RCH for lifesaving care and surgery. The damage to Edie’s intestines was so severe, she underwent two operations and spent the first seven months of her life at the RCH.

Edie will need RCH care for many years to come, but if you met her today, you would never know the trauma she has been through. >> Look out for Edie as part of our Christmas fundraising campaign.

Donate today and help make a difference to the future of children’s health.

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