RCH Foundation Newsletter - Issue 2, Autumn 2016

HANDS UP FOR

Our Children STORIES FROM THE RCH ISSUE 2: AUTUMN 2016

RCH FOUNDATION NEWSLETTER

GIVE THAT THEY MAY GROW Each year the Good Friday Appeal magic starts in the early hours of the morning. Before the sun is up, radio and television crews are setting up for a big day, ready to interview our patients and their families.

At the same time, the Melbourne Convention and Exhibition Centre (MCEC) crew are preparing for a blockbuster Kids Day Out. Scaffolding is erected, cables are connected, entertainment and activities are

set up. Volunteers, television and radio personalities, and some of our favourite characters walk through the doors ready to put a smile on many faces.

At the hospital, 3AW and NOVA radio begin their breakfast shows on Main Street, while Sunrise broadcasts live from Sugar Glider ward. RCH patient families share their inspiring stories with Victorians, highlighting the

importance of supporting the Good Friday Appeal. Soon, the Channel 7 telethon kicks-off at the hospital and our patients on the wards enjoy visits from celebrities and their favourite sports stars. There is even a visit from Melbourne Cup winning horse Subzero. >> STORY CONTINUED ON PAGE 4 Photo courtesy of Herald Sun

CONTENTS Welcome 2 Meet Zoe

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RCH Good Friday Appeal Cover story continued

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Meet Sam

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Giving in Celebration

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ChIPS Camp 6 A camp for kids with chronic illness Vale Margo Ferguson One of our Auxiliary members

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RCH people Developmental Medicine chairs

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Keep up to date with information from the RCH and join the conversation. f RCHMelbourne t RCH_Foundation rch.foundation@rch.org.au 2 rchfoundation.org.au The Royal Children’s Hospital Foundation Level 2, 48 Flemington Road, Parkville, VIC 3052 03 9345 5037 ABN 15 007 143 142 ACN 007 143 142

If this newsletter has arrived at a difficult time for you, please know we have you in our thoughts.

We acknowledge loved ones who have passed away in recent times and remember their family and friends who miss them every day.

Image: Sue Hunt, CEO with Akeira who is the hero of our upcoming May Appeal.

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

Inside this edition we thank you, our supporters for the incredible generosity you have shown to the RCH Good Friday Appeal. This year $17.4m was donated to the Appeal, an amazing achievement that would not be possible without your support.

It is your generous donations that help bridge the gap between government funding and the world class standard of health care the RCH provides to children and their families every day. This support enables the hospital to provide outstanding patient care, achieve breakthroughs in research, advancements in technologies and to invest in the best medical minds to care for our patients.

In this edition you will learn about inspirational patients Zoe, Sam and Brooke and how the RCH is transforming their lives. We celebrate the life of beloved Auxiliary member, Margo, who fundraised for the hospital for nearly 40 years, and also reflect on 10 years of support for Developmental Medicine.

I would particularly like to thank Strathmore Community BankÂŽ Branch, Bendigo Bank who have kindly supported the printing of this newsletter, allowing us to share these stories with you. Please keep in touch and let us know if you have a story to share, as we love hearing from you. You can write, email or follow us on social media (contact details to the left).

I hope you enjoy this newsletter and see that together we have the capacity to transform health care for children and young people. Thank you.

Warm regards,

Sue Hunt Chief Executive Officer

PS As a valued supporter you will soon receive our annual tax appeal. Pictured with me above is eight year old Akeira, whose story and ongoing care needs we share with you in the upcoming appeal.

Buy your tickets today and support the advancement of RCH nursing.

DAME ELISABETH MURDOCH

Luncheon

NURSING DEVELOPMENT SCHOLARSHIP

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Friday 3 June 2016 $125 per person Book online now DEML2016.eventbrite.com.au For general enquiries call 03 9345 5188

Meet Zoe BRITNEY’S RUN FOR ZOE In April as a thank you for Zoe’s care, elder sister Britney is running 200km from Mansfield to the hospital. She hopes to raise $200,000 for the RCH Plastic and Maxillofacial Surgery Department.

If you would like to support Britney’s Run for Zoe, visit facebook.com/britneysrun

Seeing Zoe today, it’s hard to tell just how far she’s come.

Born with a condition called a bilateral Tessier facial cleft, Zoe had a large gap where her facial features failed to meet during development in utero. On the left side, the opening in her cheek reached her eye, where she had no bottom eyelid. On the right, she had a split from her lips to the bottom of her eye socket.

“Doctors had told us to expect a unilateral cleft lip and palate, but what Zoe had was much worse than we expected,” says mum Jodie.

In addition to the facial cleft, Zoe was born with a hole in her heart.

Though these issues resolved themselves with time, Zoe’s facial abnormalities required the skill of the RCH Plastic and Maxillofacial Surgery Department.

At five months old, Zoe underwent her first reconstructive surgery to close the gaps in her facial skin.

At nine months, RCH surgeons closed

Zoe’s oral palette, improving her ability to feed. At 18 months, bone was removed from Zoe’s skull to create new eye sockets, cheekbones and nasal bones. At three years of age, she had lip and eye surgery. By the time she was eight, surgeons had placed expanders under her skin to encourage additional skin growth. Four months later, surgeons removed the expanders and created a cheekbone with bone taken from her ribs. Two years later, bone was removed from Zoe’s hip and inserted into her mouth to hold her upper canine teeth in place. Zoe’s most recent surgery saw a tendon in her forearm removed to create a bottom eyelid and her eye lifted thanks to a miniature titanium screw which holds the tendon in place.

Zoe still needs to undergo several more surgeries until she stops growing at about 18 years old.

Grateful for the amazing care she’s received at the RCH, Zoe hopes to pay it forward and become a doctor to help young people like her.

Strathmore Community Bank ® Branch

Images from top: Zoe with Mum, Jodie and Dad, Neil at the RCH, the Britney’s run for Zoe support team, Britney excited to be supporting the RCH.

The printing of this newsletter is proudly supported

by Strathmore Community Bank® Branch, Bendigo Bank.

337 Napier Street, Strathmore VIC 3041 strathmore3041.com.au | bendigobank.com.au/strathmore Open: Monday to Friday 9am - 5pm

Saturday 9am - 12 noon.

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Good Friday Appeal

VICTORIANS RALLY TO SUPPORT THE RCH >> COVER STORY CONTINUED

By this time, Kids Day Out at MCEC is in full swing, with a roller-skating rink, laser skirmish, Auskick, cooking classes, rides and more. While some walk the plank with pirates on the Polly Woodside, others walk to the RCH Auxiliaries booth for face painting and a lucky dip (where everyone’s a winner). Under the weather teddies stop by the Teddy Bear Hospital for an x-ray, physio session or quick doctor’s consult and a bandage to heal sprained paws.

Throughout the day, many donation cheques are presented, showing just how generous the Victorian community is, from schools and social clubs to cultural organisations and businesses. With every donation, the on-site counting room gets a little busier and eventually truck-loads of donations are brought in.

Across the city, the sound of small change rings out as volunteers shake their Good Friday Appeal tins. From Wangaratta to Warburton, Port Albert to Phillip Island, you can hear the same, with communities throughout the state doing their part to give that they may grow.

Back at the RCH, activities wrap up with Channel 7 finishing its hospital broadcast with a final wave from patients and staff. The hospital’s 4

donation stand in Main Street records over $36,000 in donations, a new record.

The most-anticipated part of the day arrives — the Good Friday Appeal Night Show. Headlined by X Factor Australia winners Cyrus and Samantha Jade, the event features performances by country singer Adam Brand, comedy trio Tripod and is hosted by Sunrise, Home and Away, and My Kitchen Rules stars. The RCH Auxiliaries also proudly present their incredible contribution of $1,472,198.

As the clock strikes midnight we learn the Good Friday Appeal has received a record-breaking $17,445,624.38. To say we were overwhelmed by your generosity is an understatement.

For 85 years, Victorians have embraced the Good Friday Appeal and made it the state-wide celebration it is today.

Thanks to your ongoing generosity and support, the RCH continues to provide world-class health care to children and their families every day.

Thank you.

“Each year it’s phenomenal to see the records getting broken, year in year out. So well done Victoria.”

- Sheddy, father of an RCH patient

DID YOU KNOW The Good Friday Appeal 2016 supports a major RCH research initiative — genomic medicine.

This emerging medical discipline uses a person’s unique genomic information to tailor clinical care to individuals. It also investigates genetic conditions to advance treatment and develop cures.

To further research genomic medicine, the RCH is part of the Melbourne Genomics Health Alliance, which brings leading local health care, research and academic organisations together to advance genomic sequencing and bring genomic medicine into our health care system.

Meet Sam From day one, little Sam has defied the odds.

During a 12 week scan, doctors detected that Sam’s vital organs were sitting outside his body. At a 16 week scan, doctors confirmed that his liver, spleen and part of his bowels were sitting outside his body in a thin membrane sac. Suspecting that a serious genetic issue was the cause, doctors advised mum Amy and dad Mark to terminate the pregnancy.

“That was a scary time because we knew we were dealing with something really serious, but terminating the pregnancy was never an option for us,” says Amy. An amniocentesis at 20 weeks was “the hardest part of the pregnancy”, as Amy and Mark waited for confirmation of their baby’s condition. The positive news that Sam’s condition was standalone and not the result of a serious genetic issue, was overshadowed by further updates from doctors.

“At every appointment the diagnosis got worse and worse.

The first bit of hope we had was when we met with an RCH surgeon. That was the first bit of light we saw.”

Brought to the RCH shortly after birth, Sam spent the first four months of his life at the hospital. Dressings for Sam’s bump, as the family affectionately call it, had to be changed weekly and doctors closely monitored his condition in those early days. The bump also put significant pressure on Sam’s diaphragm, hampering his breathing to the point that he needed oxygen and continuous positive airway pressure to keep his airway open.

Since then, “Sam’s had very few admissions and he’s doing really well. He’s full of life and a very happy little boy.”

In the next six months Sam will undergo the first of many surgeries to put his organs inside his body. The process will begin with doctors widening his abdomen to make room for his organs.

“The process will be scary, but we feel confident because we trust our surgeon Michael Nightingale and his team.”

Until then, Sam is enjoying being a toddler “just like any other three year old boy. He makes everyone laugh because he’s such a joy giver and his circumstance doesn’t stop that.”

GIVING IN CELEBRATION Libby has been cared for by the RCH her entire life. At five weeks old, she began 77 life-saving days in the Newborn Intensive Care Unit. Since then, she’s undergone 28 operations and countless hospital visits to become the happy, healthy girl she is today.

Keen to give back, Libby asked for donations to the RCH instead of Bat Mitzvah gifts, raising over $14,000 to support great care.

“It was my opportunity to give back to the RCH for the wonderful help that they have given me over all the years,” says Libby.

If you are planning a birthday or special occasion, why not consider giving in celebration. This is a simple and easy way to support our sickest and most vulnerable children. Visit rchfoundation.org.au for more information.

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ChIPS Camp

A CAMP FOR KIDS WITH CHRONIC ILLNESS The Chronic Illness Peer Support (ChIPS) program brings light-hearted relief to some of our sickest young people.

One of the programs offered by ChIPS is a camp, giving young people with a chronic illness the opportunity to get together for three days of fun, sun and achievement. These camps, entirely funded through philanthropy, enable ChIPPERS (as they’re affectionately called) to share experiences, learn from each other and engage in activities that can be difficult for them to attempt in everyday life.

ChIPPERS Brooke Hall remembers being both excited and nervous before her first camp. “I knew I was excited, and even though I was scared, I knew it was going to be a wonderful time,” says Brooke.

Day one was action-packed with fun and games as the ChIPPERS got to know each other. “After dinner we went out to the field to play a traditional ChIPS camp activity, tee ball. It was awesome to see everyone get involved and have a laugh. I even had a go and I don’t run very far, but I ran the whole way and all the ChIPPERS were encouraging about it!”

Day two was an adventure, with canoeing, climbing, performing and even a flying fox. Brooke remembers, “By this point I had met so many new people, overcome my fears, and was ready to take on whatever camp threw at me next.”

Despite a trip to Emergency to manage her illness, Brooke was determined to return to camp to say farewell to her fellow ChIPPERS. “I made it back for the end of camp and everyone was encouraging and so happy to see me, which made me feel welcomed and like I never left.”

ChIPPING IN ChIPs camps are only possible thanks to the support of generous Victorians like ChIPs ambassador Karl Kutner.

Karl is leading the charge to support ChIPS camps through the Giving Circle — Impact 5000 initiative. Bringing together charitable people and organisations, the Giving Circle asks supporters to pledge $5,000 per year for three years so every ChIPPER can participate in these life-changing camps.

“By pooling our donations, we’re able to make these camps possible and give ChIPPERS a place to enjoy amazing experiences. The Giving Circle is a wonderful way to help young people who don’t have the same opportunities as the rest of us,” says Karl.

Join the Giving Circle today by contacting Giovina Cicchitti, Corporate Engagement Manager at giovina.cicchitti@rch.org.au.

Leaving a legacy?

Is The Royal Children’s Hospital Foundation in your Will?

Call the office today on 03 9345 5037 and we’ll make sure your gift will be used exactly as you intend.

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Vale Margo Ferguson

A LIFE TIME DEDICATED TO THE RCH

Margo was a fundraising force to be reckoned with who began working with the RCH Auxiliaries after a friend encouraged her to join the cause.

Margo’s love of kids and her friend’s enthusiasm was all she needed to get involved.

‘I was always a honey pot for kids, they loved me’, says Margo. ‘I sometimes walked two and a half miles to mind kids because I’ve always liked children’.”

Initially a member of the Pelican Auxiliary, Margo was most recently secretary and treasurer for Pankina Auxiliary, and ran their fundraising stall at the RCH. A typical day at the stall started with quite the journey for Margo. She travelled with two large bags of donated items via bus, train and then tram to arrive at the hospital.

Despite her years, Margo usually put in a solid six hours of work before packing up for the journey home.

The RCH Auxiliaries community recently lost dedicated and beloved member Margo Ferguson who passed away on 17 March 2016.

“Margo was 96 years young and 39 years into her Auxiliaries membership.

Until very recently she showed no signs of slowing down,” says RCH Foundation CEO Sue Hunt.

“When asked why she continued to raise money for the hospital, Margo would say she did it for the kids,” Sue said. “She was also motivated by the work of former RCH Auxiliary members and friends.”

‘So many of my friends in Auxiliaries have passed and part of me continues to do this to honour their memory and the contributions they made to the hospital,’ she would say.”

Margo was honoured with a Living Treasure award by her fellow RCH Auxiliary members. Her dedication to the hospital and passion for helping sick kids was something to honour and be thankful for.

She will be greatly missed.

MEERKAT IN SCRUBS If you are looking for a gift, the RCH Auxiliaries Shop is now selling Meerkats in red and blue scrubs for just $29.95

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Please complete and mail this form to: The Royal Children’s Hospital Foundation, Level 2, 48 Flemington Road, Parkville, VIC 3052 You can also donate online at: rchfoundation.org.au/donate

If you choose to make a gift today please know how gratefully it will be received.

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Image from left: Professor David Amor and Professor Katrina Williams.

MEET THE CHAIRS IN DEVELOPMENTAL MEDICINE The RCH Foundation recently celebrated 10 years of philanthropic support for RCH Developmental Medicine. In 2011, the RCH appointed the first Australian Chair in Developmental Medicine, Professor Katrina Williams, a leader in autism research. This position was created in partnership with the Apex Foundation for Research into Intellectual Disability, the University of Melbourne and the RCH Foundation.

Since then, there has been an exponential increase in research activities, resulting in significant improvements in the management of children with disabilities.

In February, Professor David Amor was announced as the second Chair in Developmental Medicine. This position is supported by the Galli Trust through the University of Melbourne. Professor Amor is a paediatrician and clinical geneticist, who will work closely with Professor Williams to complement and build on her existing research and academic leadership.

This will not only build capacity in academic Developmental Medicine, but also facilitate the translation of research into evidence-based clinical practice to directly support children with disabilities.

Did you know: Developmental Medicine supports children with diasabilities, improving knowledge about the causes, and outcomes of treatment.

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. Fill in your details and then cut out that section and return it in the envelope provided.

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

“The RCH is the best hospital with the best doctors. They are so dedicated because they love what they do.� Felisia, RCH patient mum.

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