Hands Up for Our Children: Spring 2016

HANDS UP FOR

Our Children STORIES FROM THE RCH ISSUE 4: SPRING 2016

RCH FOUNDATION NEWSLETTER

Alex (right) with big sister Isabelle at the RCH

A NEW BEGINNING FOR ALEX Nine fractures, three respiratory arrests, one tracheotomy and one life-saving liver transplant. Although Alexandra Bacon’s journey has been heart wrenching, seeing her cheeky smile now, you’d never know just how difficult it has been.

At 10 weeks old, Alex was diagnosed with a life-threatening condition

called Biliary Atresia, where the ducts that carry bile from the liver to the gallbladder are either absent or fail to develop normally. Bile is then trapped inside the liver, causing irreparable damage.

“It’s your worst nightmare coming true,” said Sondra, Alex’s mum. “I remember very clearly the specialist saying, ‘Oh, we have a problem here’ and I could see that it was serious, but I was in a state of shock and didn’t really hear what they were saying

because all I could hear was my heart in my throat. We just weren’t prepared for anything to go wrong.”

From here, Alex became a patient at The Royal Children’s Hospital (RCH).

At three months old, she underwent a Kasai Procedure, which surgically bypasses the failing bile ducts and prolongs the life of the liver. >> TURN TO PAGE 12 TO READ ABOUT ALEX’S INCREDIBLE RECOVERY

CONTENTS Welcome 2 Great care is king

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Finley rides for the RCH

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Towards a digital hospital

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Funding the future

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Lexi’s birthday wish

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Fly for the Kids

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Out of sight

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Brilliant Minds

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Did you know

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A new beginning for Alex - cover story continued

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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

CEO Sue Hunt with RCH fundraiser, Charlie and his dad Gary

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

Above I’m photographed with RCH patient Charlie and his dad Gary, who raised an incredible $9,600 for the hospital. Their fundraising will support important discoveries benefitting children with Adrenal Gland Disorders.

In this issue we profile the pioneering work of Dr Sebastian King, and introduce you to Associate Professor Andrew Kornberg, who in March 2017 will circumnavigate Australia flying solo, raising money for the 2017 Good Friday Appeal.

You will also meet an array of inspirational fundraisers, from former RCH patient Finley, who cycled an incredible 230kms from Maffra to Melbourne in support of the hospital, to RCH1000, a dedicated group of philanthropists who have been supporting research initiatives for more than 16 years.

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

On behalf of the patients and their families who continue to receive world-leading care because of your generosity, I would like to sincerely thank you for supporting the RCH Foundation this year. I wish you and your family a safe and happy festive season.

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

Warm regards,

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

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Sebastian King in theatre at the RCH

Great care is king It’s something we take for granted: feel hungry, eat, digest your meal and go about your day. Unfortunately for many children, eating a meal isn’t simple.

Or enjoyable.

That’s where Dr Sebastian King comes in. Dr King is a gifted surgeon and researcher who is passionate about helping children whose “guts don’t work.” Dr King has dedicated his career to researching the causes and developing better standards of care to help children with serious gut issues enjoy a better quality of life. The RCH Foundation is proud to support this work.

“For children with a gut problem and their families, it’s hard to talk about because there’s a real stigma that comes along with it. Without being able to easily eat and digest, many children miss out on the social aspects of life. It’s hard to enjoy a friend’s birthday party when you’re worried you’re going to choke or have an accident.”

As a paediatric surgeon, Dr King performs crucial surgery on babies with conditions like Oesophageal Atresia, where the oesophagus and stomach aren’t connected, and Hirschsprung’s Disease, where a section of the colon is missing the nerves needed to pass stool. Dr King has also started using 3D printing for children born with abnormalities of the anus. To ensure these intricate

surgeries are successful, 3D models will allow him to practice surgeries before they happen.

Dr King’s research delves deeper into these conditions, aiming to find out why they happen and how they can be prevented.

Often surgery is seen as the cure, but for many children it’s just the beginning of the care they’ll need. Dr King is conducting ongoing follow-ups with his patients, measuring how well their bodies function post-surgery, as well as their overall quality of life.

“Surgery doesn’t always solve the problem and by not following up, we’re failing these children. We must ensure that they get the care they need and don’t slip through the cracks.”

Dr King’s ground-breaking research with renowned embryologist Dr Don Newgreen is seeing early signs of success. For sufferers of Hirschsprung’s Disease, the current treatment is to remove the defective section of colon and connect the working areas of the gut together. Hoping to remove the need for surgery, Dr King and Dr Newgreen are testing the implantation of nerve cells into defective colon tissue. Early results show that these nerve cells are activating this colon tissue and enabling it to work properly.

It’s cutting-edge work that’s only possible thanks to your support.

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Finley rides for the RCH It’s been 10 years since the RCH saved Finley (Fin) Warren’s life. Determined to give back to the hospital as a thank you for the care he received, Finley has busked and biked the 230km journey from Maffra to Melbourne, raising over $24,000 for the hospital.

“We thought it would be nice to give back (to the RCH) seeing as they saved my life 10 years ago. I feel happy we have this hospital and so many lovely people to take care of us.”

- Fin Photo’s top to bottom: Fin arriving at the RCH after riding over 230kms from Maffra.

Fin meeting a baby in NICU with the same conditon he was in for 10 years prior.

10 years ago, doctors confirmed that Fin had Long-Gap Oesophageal Atresia, meaning that his oesophagus wasn’t connected to his stomach. Fin was admitted to the RCH Newborn Intensive Care Unit (NICU) unable to be fed orally or swallow his own saliva without choking. Three major surgeries and around-the-clock care were needed to connect Fin’s oesophagus to his stomach and get him well.

To this day, the gap between Fin’s oesophagus and stomach is still one of the longest RCH doctors have seen.

It’s been almost two years since Fin’s last hospital visit, but he and his family remain grateful for the life-saving care he received. To celebrate the anniversary of his graduation from NICU, the Warren’s wanted to give back to the RCH. An accomplished busker playing regular gigs at local markets, as well as a cyclist, Fin was keen to combine his two passions to help the hospital.

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“We sat down to discuss how we could raise the money and the idea of cycling from Maffra to Melbourne was suggested. There was no going back as Fin’s enthusiasm was pure motivation for us all. Fin’s determination to give back to the hospital is truly inspiring and brings us so much joy. We couldn’t be prouder,” said Fin’s mum Kelly.

Arriving at the RCH on 6 October 2016, Fin celebrated the end of his bike ride with some of the doctors and nurses that cared for him all those years ago. Fin also had the chance to tour the NICU and meet a neonate named Trent, who has Oesophageal Atresia, just like he did.

“As a family, we are so grateful to the NICU because without this incredible facility and the expertise of the staff who work there, our generous 10-year old boy simply wouldn’t be here and many of the sickest babies just wouldn’t have a future,” said Kelly.

Towards a digital hospital For the very first time, patients and families at the RCH have access to their medical records, and it’s our generous community of supporters who helped make it happen. This follows the launch of Australia’s first comprehensive patient and family portal - My RCH Portal.

My RCH Portal is a website and app that allows parents and guardians to access key elements of their child’s medical records. Never before have families had such access to information about their child’s care when and where they need it, and it is making a significant difference.

Two-year-old Benjamin is one of the RCH’s Complex Care patients, meaning he sees a number of doctors and specialists as part of his ongoing care needs. For Benjamin’s family, My RCH Portal is a game-changer.

Benjamin’s Mum Tracy explained the portal is a one-stop shop, helping to manage appointments and providing her with important, up to date information.

“It has made things a lot easier because I can look at results as soon as they are loaded on the portal, and without having to contact a doctor,” said Tracy.

“Benny sees many different specialists, so to be able to find everything all in the one place has made things easier.

I also don’t have to carry around a heap of paperwork with me anymore!”

My RCH Portal is user-friendly and accessible, enabling families to: •

add or update information on their RCH electronic medical record about medication, allergies or other health problems

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request, confirm or cancel upcoming hospital appointments

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see which medications have been prescribed and instructions for taking them

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see test and imaging results

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read some of the notes taken by doctors in appointments and view their child’s care plans.

My RCH Portal was developed as part of the hospital’s $48 million electronic medical record (EMR), which went live in April 2016. Once again leading the way, the RCH was one of the first paediatric hospitals in Australia to replace paper-based medical records with a comprehensive electronic system.

To find our more and sign up to My RCH Portal visit www.rch.org.au/emr The EMR project was jointly funded by the Victorian Government, the hospital, and the RCH Foundation. The RCH Foundation contribution enabled the inclusion of additional functionality within the RCH EMR such as the My RCH Portal.

Benjamin and mum Tracy using the My RCH Portal

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Funding the future Research is the key to transforming the future of children’s health. Whether it’s a new medication, form of treatment or a cure for childhood illness, research is essential to advancing great care at the RCH. RCH1000 is a collective of generous individuals who each give $1,000 annually to support vital research programs at the hospital. Conducted in conjunction with the RCH, Murdoch Childrens Research Institute (MCRI) and the University of Melbourne Department of Paediatrics, these projects are providing a healthier, happier future for our next generation.

Since its inception in 2000, RCH1000 members have donated more than $3.7millon to the hospital.

BRAIN IMAGING RESEARCH LABORATORY For five years RCH1000 supported a major neuroimaging project at the hospital. A collaboration between the RCH and MCRI, the funding helped to advance the neuroimaging analysis laboratory that performs various diagnostic imaging tests. These tests assess the structure and function of different organs and systems, which are used in the medical and surgical management of children with brain tumours, epilepsy, stroke, head trauma and neurometabolic disorders.

As a result of the project, the neuroimaging laboratory was able to implement brain imaging never before used at the hospital. For the first time, clinicians were able to image patients experiencing repeated seizures while in the MRI scanner. The team also began to use tractography, a 3D modelling technique which visually maps key neural connections. These maps are then used to inform surgical route planning, helping to determine the best course of action and minimise post-surgical deficits in patients.

One of these patients is four-year-old Olivia. Diagnosed with severe epilepsy as a toddler, the onset of her condition was rapid and intense. Within a week she was suffering up to 120 mild seizures a day, and Olivia’s vocabulary began to diminish and her bubbly personality waned.

Dr Simon Harvey, an RCH neurologist and epilepsy expert identified malformations on the side of Olivia’s brain as the cause of seizures. Dr Harvey explained to Olivia’s parents that if the seizures continued, Olivia would be autistic, intellectually disabled and probably have no language.

Dr Harvey teamed up with neurosurgeon Wirginia Maxiner and specialists from the neuroimaging laboratory to plan Olivia’s brain surgery. Advanced neuroimaging techniques like tractography were used to map out the brain regions with abnormal metabolism and localise the important neural tracts that carry information about movement to the rest of the body. Then at just 21 months, Olivia underwent a 12-hour operation to “disconnect” an entire quarter of her brain.

Above: Scans of Olivia’s brain showing Neural tracts that needed to be avoided during surgery and regions of the brain (green/blue) with abnormal metabolism 6

Olivia has been seizure free since the surgery and has made a full recovery, reaching her developmental milestones with ease.

CHILDHOOD ORIGINS OF HEART DISEASE RCH1000 also supports a four-year research project led by RCH Cardiology to determine if heart disease can be traced back to childhood.

While heart attacks and high blood pressure mostly affect adults, atherosclerosis (the thickening and hardening of blood vessels) can develop when we are young, being detected in otherwise normal children. So far, the study has shown that faster weight gain in early infancy due to an excessive intake of calories is associated with thicker blood vessel walls, an indicator of increased risk for future cardiac issues.

THANK YOU EFREM The RCH Foundation would like to thank outgoing RCH1000 Chairman, Efrem Goldhammer OAM for his vision and dedication to the hospital.

Efrem established RCH1000 in 2000, and since this time the program has continued to grow, funding numerous life changing research projects at the hospital. Efrem will continue his association with RCH1000 in the role of Chairman Emeritus.

AGE APPROPRIATE PATHOLOGY The RCH houses the only laboratory in the country with comprehensive data on normal levels of childhood blood coagulation, or bleeding and clotting, for all appropriate age groups. Though relatively simple, the information gleaned through this data has significant clinical implications for the hospital’s ability to accurately diagnose bleeding and clotting disorders and manage patients undergoing blood thinning treatment.

Thanks to RCH1000 funding, this program is expanding its work to include normative data for other tests in haematology, immunology and biochemistry. This information is essential for optimal care.

MEET BARRY We are delighted to announce Barry Novy OAM as the new Chairman of RCH1000. Barry has a long established relationship with the hospital, having previously been Chairman of the RCH Foundation, a Board member of the hospital and more recently Chairman of the Children’s Bioethics Centre Development Board. Barry commenced the role in August 2016.

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Lexi’s birthday wish Cancer survivor Lexi knew just how to celebrate her 9th birthday: fundraising for RCH patients like her.

Diagnosed with an aggressive blood cancer called acute myeloid leukaemia (AML) at 20 months, Lexi has been an RCH patient for most of her life.

“Lexi was feeling very unwell with a cold, was pale and had small bruises called petechiae, which just didn’t seem right,” said her mum Nicola. “We took Lexi to our GP for a check-up and they referred us to the RCH Emergency Department.

Lexi underwent some blood tests at the hospital and was immediately diagnosed with leukaemia.”

AML involves an overproduction of immature white blood cells, which crowd the bone marrow and prevent it from creating normal blood cells. The immaturity of these cells also means they are unable to properly fight infection.

Lexi began intensive treatment at the RCH. After three rounds of chemotherapy put Lexi into remission, doctors suggested she undergo stem cell therapy in an effort to prevent her high chance of relapse. This involved an intravenous transplant of cord blood, rich in blood-building stem cells, from a donor who was a genetic match. The cord blood transplant saved Lexi’s life, but was not without complications.

The donor’s stem cells have caused an immune response called graft-versus-host-disease (GVHD), whereby they recognise Lexi’s body as ‘foreign’ and attack it. Lexi takes immunosuppressant medication every day to stop the donor cells from attacking hers. The medication also prevents her body from rejecting the cells. Lexi visits her RCH oncologist once a month to closely monitor her condition.

Although Lexi’s journey has been tough, she loves visiting the RCH and is keen to help kids like her.

“On her 8th birthday Lexi decided that she wanted to fundraise for the RCH and that idea stuck with her all year. She decided that, instead of gifts, she would ask friends and family to make a donation to the hospital for her 9th birthday. A friend suggested we do it through an online fundraising page and it just took off” said her mum Nicola.

Lexi’s generous idea raised over $2,200 for the RCH and far surpassed her initial fundraising goal of $250.

“We are both so incredibly proud of Lexi, not just for how strong and amazing she was through her treatment, but for her generosity in helping others in her position.”

MAKE YOUR BIRTHDAY COUNT! Celebrate by supporting the hospital. To find out how, contact us on 03 9345 5059 or rch.foundation@rch.org.au

Birthday girl Lexi

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Fly for the Kids

MEET ASSOCIATE PROFESSOR ANDREW KORNBERG

There are two things in life that Associate Professor Andrew Kornberg is passionate about – helping sick kids get better and flying! That’s why in March 2017, Associate Professor Kornberg will take off on a fundraising adventure like no other as he attempts to circumnavigate Australia flying solo. He will be raising money for The Complex Movement Disorder Program through the 2017 Good Friday Appeal.

Andrew’s fundraising mission is inspired by the brave and courageous patients and families who are cared for by the RCH. “Just like the kids I have treated at the RCH since 1981, I am now facing a significant challenge in flying solo around Australia. It’s minor compared to what most sick kids face every day, but it’s a challenge I intend to embrace,” said Andrew.

Andrew’s journey will take him 27 days and he will visit RCH patients around Australia along the way.

He will fly more than 27,000km, spend more than 64 hours in the air and stop in 37 locations.

Join Andrew on this fundraising journey of a lifetime. Learn more about how you can get involved and support Fly for the Kids at flyforthekids.org.au

SUPPORT ANDREW ON HIS MISSION Donate at flyforthekids.org.au

Out of sight Victorian Specsavers stores are making a big impact by working together to raise funds for The Royal Children’s Hospital Foundation.

For every pair of glasses purchased, customers receive a donation token with which they can support Specsavers’ national charity, The Fred Hollows Foundation, or local charities like the RCH Foundation. For every token deposited, the Specsavers store makes a donation on their customers’ behalf.

“Supporting the communities we operate in is a core part of the Specsavers philosophy.

We are very community and charity focussed, and our store partners wholeheartedly embrace that,” said Duchesne Markham, Specsavers Local Public Relations Manager.

Since the Specsavers Community Program began, 22 Victorian Specsavers stores have shown their support for the RCH, raising over $100,000 for sick kids. This year Specsavers is funding a speech generating device that allows non-verbal patients to communicate through eye tracking technology.

Specsavers Wyndham Village Optometrist Vicky Lin is proud to support the RCH. “It has been both a privilege and a pleasure to contribute to the funds that support some incredible initiatives that make life so much better for children at the RCH.” Her colleague, Dispenser Bhavisha Pitrola added, “We are very proud that the Specsavers Community Program enables and encourages us to get involved in community projects and make a real difference.”

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Brilliant Minds Murdoch Childrens Research Institute (MCRI) is celebrating 30 years of lifechanging discoveries.

conjunction with the hospital. Researchers work alongside doctors and nurses to ensure their work improves the lives of our sickest and most vulnerable children across Australia and the world.

Established in 1986 by Professor David Danks, with the generous support of Dame Elisabeth Murdoch, MCRI was born from the meeting of these two brilliant minds.

Together, they established what is now Australia’s largest child health research institute, MCRI.

During MCRI’s three decades of discoveries, your generosity has helped it grow. Through your support of the hospital, the RCH Foundation funds important MCRI projects that are improving health outcomes for RCH kids and children around the world.

In its 30 years of existence, the Institute’s work has encompassed a broad range of research, from laboratory science to large population studies. Located onsite at the RCH, MCRI embarks on numerous research projects in

One of these projects is making significant breakthroughs for children affected by kidney disease.

FINDING THE GENETIC CAUSE OF KIDNEY DISEASE Since 2013, the RCH Foundation has supported Dr Cathy Quinlan in her role as an MCRI Honorary Research Fellow.

Through her fellowship, Dr Quinlan leads the Kidney Development, Disease and Regeneration Group, which has greatly increased the potential for lab and clinical research within nephrology.

Along with fellow researcher Professor Melissa Little, Dr Quinlan co-leads an exciting new RCH Foundationfunded project, Pilot Renal Genomics and Induced Patient Stem Cell Program (ReGeniPS). This clinical and research program investigates the genetic cause of kidney disease and uses stem cells generated from RCH patients to determine the underlying basis of their disease.

Since the project began, Prof Little has made a major discovery, successfully developing mini-kidneys grown in a dish from stem cells.

“These mini-kidneys are called organoids, take about three weeks to develop and mimic kidney development in the embryonic stage,” said Prof Little. “They appear to respond to toxic drugs, so we can use them to model diseases and potentially use them to screen for drug toxicity, saving patients from being exposed to drugs that could damage their kidneys.”

Photos top to bottom: Mini-kidney grown in a dish from stem cells.

Professor Melissa Little with a colleague in the lab.

WISH TO LEAVE 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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DID YOU KNOW? The RCH Education Institute makes the hospital space a learning place for children with chronic illness. Now, thanks to funding from our generous community of supporters, RCH teachers have a fun, new app in their teaching toolkit: Ed and the Curious Crew at The Royal Children’s Hospital.

Ed has already proven to be a winner, being shortlisted as one of the world’s best apps for kids and earning a prestigious digital industry award.

The app is free to download and uses fun and games to explore themes like education, fundraising and sustainability.

“Missing school doesn’t mean missing out on learning,” says Bridie Mackay, RCH Education Institute Director.

“Our teachers use the hospital environment in creative ways to keep students engaged in education. Now, thanks to funding from the RCH Foundation, we’ve been able to create a free learning resource that families can download and use anywhere: on the wards, in clinics, or at home.

Learning really can happen anywhere – and it’s fun.” www.rch.org.au/education/apps/edapp

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.

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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A new beginning for Alex

MEET THE HERO OF OUR CHRISTMAS CAMPAIGN >> COVER STORY CONTINUED Despite the surgeon’s best efforts, Alex’s liver was damaged beyond repair and she needed a transplant to survive. Due to her extensive liver damage, Alex failed to gain weight and developed Osteopenia, a condition where the bones become soft, causing her nine fractures in just 14 months.

Another curve ball struck when Alex began to have respiratory arrests.

Her longest arrest was a devastating 14 minutes. Alex was diagnosed with Tracheomalacia, whereby the cartilage in her windpipe hadn’t developed properly, causing her tracheal walls to collapse and prevent breathing.

“She started choking in the RCH clinic waiting room and before I knew it had turned dark blue and stopped breathing. Our gastroenterologist Dr George Alex came running down the corridor and actually resuscitated her himself. From there, Alex was taken to the Paediatric Intensive Care Unit where she had her tracheotomy and four weeks later we got the call about the new liver.”

Though Alex was in the operating theatre for nearly 12 hours, the marathon surgery was a success.

“Seeing Alex after the transplant was quite overwhelming, but we were just really happy and relieved that it all went well. We thanked the surgeon and he was so modest. We kept thinking, how can we possibly thank him and his team enough for saving our child’s life?”

Alex now has a new lease on life, but continues to visit the RCH every few months for check-ups.

“She’s a really happy little girl and very spunky.

She goes at a hundred miles an hour. 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.”

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