Hands Up for Our Children: Winter 2017

HANDS UP FOR

Our Children STORIES FROM THE RCH ISSUE 7: WINTER 2017

RCH FOUNDATION NEWSLETTER

Mohamed at the RCH in early 2017

MOHAMED SHARES HIS INCREDIBLE RCH JOURNEY Recipient of Australia’s first paediatric intestinal transplant, RCH patient Mohamed El Shazly has had an incredible journey. Here he shares that journey in his own words.

This is a story about my wonderful journey at The Royal Children’s Hospital (RCH). It all started when I was one day old in my home country of North Sudan in Africa and was diagnosed with Hirschsprungs Disease, which means that part of my colon was missing the nerves needed to work properly.

When I was three years old I went to Egypt for better care.

There they removed some of my large and small intestines and I was able to live well for a couple of months. However, things quickly turned for the worst when I turned four. For a while my mum traveled with me back and forth to Egypt before I was able to come to Australia. >> TURN TO PAGE 4 AND 5 TO READ MORE.

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

Inside this issue Australia’s first paediatric intestinal transplant patient, Mohamed shares his RCH journey in his own words. Mohamed’s strength and courage is inspiring and his outstanding recovery is a wonderful example of what the hospital can achieve through philanthropic support.

This edition also features some incredible stories on our passionate supporters. From the Prior Family Foundation’s commitment to cardiac care, to the legacy left by the Norman, Mavis and Graeme Waters Charitable Trust.

We also put a spotlight on some of our devoted bed sponsors and share how little Ollie’s first birthday is giving back to the RCH.

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The hospital is fortunate to have so many wonderful supporters working in numerous ways to change the future of children’s health. I love getting to know more about what inspires them to support the hospital and sharing the difference that support makes to our children.

I hope you do too.

We also have the privilege of introducing you to the Director of RCH Respiratory Medicine, Associate Professor Sarath Ranganathan. An internationally recognised expert in clinical respiratory physiology and early lung disease, Sarath answered five fun and quirky questions about his work and life.

I hope you enjoy this issue and see the incredible impact your support has on the children and families that rely on this hospital.

Warm regards,

2 It’s been a busy Winter. In the photo’s above: 1.

Sue Hunt Chief Executive Officer

Keep up to date with information from the RCH Foundation and join the conversation. f RCHMelbourne t RCH_Foundation rch.foundation@rch.org.au 2 rchfoundation.org.au 2

We celebrate another year of Workplace Giving supporting the RCH 2. Patron of Auxiliaries, Louise Gourlay OAM and President of Auxiliaries, Dr Miriam Weisz cutting the cake to celebrate 95 years of the RCH Auxiliaries supporting the hospital.

Thank you to our newsletter sponsors

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

337 Napier Street, Strathmore VIC 3041 bendigobank.com.au/strathmore

Investing in children’s health The RCH Foundation is lucky to have the support of philanthropic trusts and foundations which share our passion for building a brighter future for sick children.

Here we feature the stories of two of these like minded organisations.

Established in 2015, the Prior Family Foundation is a labour of love for philanthropists David and Sallie Prior.

“We are passionate about giving back to causes that are important to us and created the Prior Family Foundation so we could make a real difference.”

Shortly after the Foundation was launched, the Prior’s began their support of the RCH with a donation towards Educational Play Therapy. Using play to help children cope and process their hospital experiences, it also prepares children for medical procedures. By helping patients explore the medical equipment that will be used and practice the clinical tasks they will do, Play Therapy makes procedures less stressful, meaning they are completed quicker and children spend less time in hospital.

Recently, the Prior Family Foundation also supported the purchase of a Ventricular Assist Device (VAD) for RCH cardiac patients with heart failure. Sometimes used as a bridge to recovery, VADs are most often used in children awaiting a donor heart, doing the work of the left ventricle to pump oxygenated blood to the body.

“VADs are an amazing way of liberating children waiting for a heart transplant. Instead of being stuck in a hospital bed, they’re able to live at home, see their friends, go to school and just be kids.”

When asked why they’re so passionate about supporting RCH kids, the answer is clear for David and Sallie.

“The Prior Family Foundation supports the hospital because children are our future.

You never know what a child might accomplish or what kind of contribution they might make in their lives. By supporting the RCH, we’re helping these children be healthy so they can take on any opportunity in life.”

For more than 10 years, the Norman, Mavis and Graeme Waters Charitable Trust has contributed over $1 million to the treatment, care and rehabilitation of childhood burn victims.

Norman and Mavis Waters, together with their only child Graeme, lived in Brighton in Melbourne’s South East. The couple were lovers of the arts and their community, and ran a successful newsagency on Chapel St in Prahran.

Their RCH journey began when Graeme was a young boy and health concerns brought the family into the hospital. “Both Norman and Mavis were appreciative of what the hospital did for Graeme at that time,” said CoTrustee Peter Walsh.

Recovering well and progressing into a young man, Graeme would often help out at the family’s newsagency and was the light of Norman and Mavis’ life. When a car accident took Graeme’s life too soon, Mavis knew she wanted to honour his memory, and established the Norman, Graeme and Mavis Charitable Trust, naming the RCH as one of the beneficiaries. The generous endowment has touched the lives of many RCH burns victims over the past 10 years.

“When a child suffers a burn, even a minor one, they can often require ongoing treatment into adulthood to help them grow and develop, and ensure they can function (play and work) to the best of their abilities.

Donations like those from the Waters Charitable Trust help us continue to treat and care for these patients long term.”

Kathy Bicknell, Clinical Nurse Consultant, RCH Burns Unit.

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Meet Mohamed >> COVER STORY CONTINUED After getting off the plane, I came to the RCH where I had surgery to remove just about all of my intestines. I then stayed in hospital for nine months straight.

When I was seven years old and in the best condition possible, I was able to start school, which made me the oldest kid ever in every year level! It was not easy, as I had a nasogastric tube which fed me for nine months and had Total Parenteral Nutrition (TPN) for 10 years straight. I had to return to the hospital nightly to have it and could only go on day leave until my parents were trained to connect me to my feeds and TPN so I could stay at home. I also struggled with infections and was frequently in and out of hospital.

In 2012 Mohamed underwent life changing liver and intestinal transplant surgery - opposite are images of the day that changed his life.

1. One last hug with mum before surgery 2. Being wheeled through the Cockatoo Ward on the way to surgery

In 2007, my liver became so irreversibly damaged that my eyes and body went yellow, and it was clear I would need a liver transplant. While I was waiting for the transplant I lived my life the best that I could, making friends and unforgettable memories with nurses, doctors and all at the RCH, which makes them very much family.

In 2012, I had a life changing liver and intestinal transplant surgery, which gave me and all like me hope for a second chance at life. Now I live TPN and liver problem free, being able to cause mischief and eat whatever I like. And it’s all thanks to the RCH.

3. In the southern hemisphere’s largest lift on the way down to surgery 4. Professor Winita Hardikar and her team in surgery 5. Mohamed back on the ward after a sucessful surgery.

GETTING MOHAMED WELL The Director of RCH Gastroenterology, Professor Winita Hardikar has been Mohamed’s specialist throughout his journey.

“When I first met Mohamed 10 years ago, his liver was so damaged and his gut wasn’t working, so it was clear a transplant was needed.”

At the time, only one intestinal transplant had been completed in Australia for an adult patient. Intestinal transplants are incredibly challenging because the gut is a highly complex organ that plays an important role in the body’s immune response. Therefore, the risk of rejection after transplantation remains high despite advances in immunosuppression therapy.

This meant that Mohamed needed a high level of care to ensure a new liver, small intestine, duodenum and pancreas could be transplanted successfully.

“We learned a huge amount from this first transplant, which has helped us provide exceptional care for the patients that have come after Mohamed,” said Winita. “Mohamed has really become a mentor for these children and young people, someone they can look up to.”

Applying to become Australia’s Nationally Funded Centre for intestinal transplantation, the RCH has worked with Austin Health to develop the Australian Intestinal Transplant Service (AITS), which will provide life-saving care to some of our sickest children.

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“Thanks to the generosity of RCH supporters, we received funding that has been crucial for establishing AITS and enabling us to apply to become a Nationally Funded Centre for paediatric intestinal transplantation.”

Professor Winita Hardikar

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Supporting sick kids, one bed at a time For many children admitted to the RCH, their ward becomes a second home.

Meet some of the supporters who are helping sick kids by sponsoring beds across the hospital.

RCH PATIENT, RILEY DOCKER

ROMAN MIDDLETON CHARITY GOLF DAY

THREE BEDS / BUTTERFLY AND COCKATOO WARDS

ONE BED / COCKATOO WARD

Riley Docker was a born fighter. His arrival was cause for celebration for his parents and two older brothers, but it soon became clear that Riley’s little body was very sick.

From day one he battled. Riley suffered a seizure and serious brain haemorrhaging, with his body thrown out of balance as it reacted to the bleed. “It was devastating,” said mum Melinda. “He was so sick we weren’t allowed to cuddle him.”

A team of specialists in the Newborn Intensive Care Unit (Butterfly Ward) worked tirelessly to help treat Riley and, with the insertion of a temporary shunt to drain fluids from his brain, the Dockers were able to take their little fighter home just four weeks later. “Throughout the whole experience the wonderful RCH Foundation team didn’t just care for Riley, they cared for us”.

Riley’s family wanted to do something to give back and, after reaching out to the RCH, chose to sponsor three beds so they could directly support the teams that helped Riley the most.

Eight months on, Riley’s had a permanent shunt inserted, and the little fighter is achieving all of his developmental milestones under the watchful eye of his two adoring brothers.

STRATHMORE COMMUNITY BANK 10 BEDS / BUTTERFLY, COCKATOO, KOOKABURRA AND KOALA WARDS Strathmore Community Bank has supported essential care and assistance for RCH patients and their families for eight years. “A large number of our board members and shareholders have had firsthand experience with the RCH. We’re lucky to have funds that allow us to support this wonderful institution,” said Peter Brown, Chairman of Strathmore Community Services.

Strathmore Community Bank has donated over $300,000 to the RCH, including the sponsorship of 10 beds across the hospital.

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If you ask around Heathcote, Roman Middleton is a pretty big deal. This superhero loving six year old not only has a golf day named after him, but he also has a brand new liver.

Just before his fifth birthday, Roman became seriously ill without explanation and was airlifted to the RCH. Within seven days of his admission, Roman was placed on the transplant list for a new liver.

“To this day it is not known what caused him to get so sick so quickly,” said mum Jess. “The staff, nurses and doctors were amazing, we couldn’t have asked for better people to be surrounded by during such an uncertain time.”

Roman’s experience at the RCH propelled his grandparents Ally and David to give back, and the couple set about organising The Roman Middleton Charity Golf Day. The whole community chipped in and with 120 teams competing, as well as raffles, barbeque and live music, the day raised over $5,000. With the funds raised, Ally and David, on behalf of the whole community, were able to sponsor a bed on the Cockatoo Ward, where Roman had spent three months recovering.

Encouraged by the overwhelming community support, preparations are already underway for a bigger and better golf day in 2018. Keep an eye on our website to find out how you can be involved in next year’s event.

Sponsoring a bed is an opportunity for you to support an area of the hospital that you are passionate about. To find out more, contact Donna Aranyi, Community Fundraising Manager on 03 9345 4510 or donna.aranyi@rch.org.au

Celebrating Ollie’s first birthday The arrival of their son was meant to be a joyous occasion for the O’Keefe family.

However, though he arrived without much fuss, in a matter of hours Ollie’s breathing deteriorated. The team at his local hospital acted quickly, intubating Ollie and flying him and his family to the RCH. Ollie spent the next 12 days in the Newborn Intensive Care Unit (Butterful Ward) attached to machines to help him breathe. He also underwent a series of tests and treatments to determine the cause of his breathing issues. While the health of their newborn baby was uncertain, it was the wonderful RCH team which helped keep the O’Keefe Family stable.

“I’ll always be grateful for the team on Butterfly Ward for all of the emotional support which has given us such positive memories from the experience,” said Sarah.

Relief came in the form of a diagnosis of viral meningitis and the good news that Ollie was improving. Eight days later the O’Keefe family took their son home for the first time.

“As soon as we got home from the hospital I knew that every year on Ollie’s birthday we would make a donation to the RCH.” Ollie is now celebrating his first birthday as a healthy, happy and determined little boy. With the encouragement of family and friends, the O’Keefe’s have set up an Everydayhero page, allowing others to support the hospital in celebration of Ollie’s milestone birthday. The family have been overwhelmed by the support they’ve received, with family and friends contributing generously to ensure that babies like Ollie can continue to receive great care at the RCH.

Make your celebration count! Celebrate by supporting the hopsital.

To find out how, contact us on 03 9345 5059 or rch.foundation@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.

“We couldn’t be more grateful to the RCH for everything they’ve done for us.

Without the hospital, our little girl wouldn’t be alive.” Sondra, mum of RCH patient Alex.

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MEET SARATH The Director of RCH Respiratory Medicine, A/Professor Sarath Ranganathan is internationally recognised as an expert in the field of clinical respiratory physiology and early lung disease.

Hailing from the UK, Sarath has made Melbourne home since 2004 and cared for some of Victoria’s sickest children.

We asked Sarath five questions to learn more about him.

1.

In five words, tell us why you’re passionate about your work?

I meet beautiful human beings.

2. How does philanthropy support your work?

It helps me innovate and change direction to provide the best possible care.

3. If you could only take three things with you to a deserted island what would they be?

• My children • The DJ app on my phone • A cricket bat and ball (if this counts as two items I can attach the ball to the bat with elastic) 4. What book are you reading right now?

The Wind Up Bird Chronicle by Haruki Murakami.

It’s a surreal sort of detective story that’s also about a disintegrating marriage and World War II secrets.

5. Who is the most influential person in your life?

Martin Luther King because he followed Gandhi’s principles of non-violence and bravery to stand up against hypocritical, inherent evil.

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