HANDS UP FOR
Our Children STORIES FROM THE RCH ISSUE 5: SUMMER 2017
RCH FOUNDATION NEWSLETTER
Brooke sitting tall at the RCH after DBS
BROOKE’S BATTLE At the age of nine, Brooke started losing control of her body. One day her shoulder dropped and soon walking became a struggle. At 14, she was no longer able to feed herself and remained doubled over, unable to straighten up. Born with a rare and degenerative movement disorder called dystonia, Brooke suffered from unrelenting muscle cramps that twisted her
into uncomfortable positions and movements. Occasionally, these muscle cramps became lifethreatening full body spasms, or dystonic storms, that saw her rushed to The Royal Children’s Hospital (RCH) Emergency Department. “It’s the worst form of muscle cramp you can imagine and no matter what you do, you can’t release these cramps. Brooke would be exhausted from them, but she couldn’t get any relief. After one episode she looked at me and said ‘I’m broken’,” said Sue,
Brooke’s mum. Her RCH neurologist, Associate Professor Andrew Kornberg, tried numerous medicines and treatments, but nothing worked. Brooke’s only option was Deep Brain Stimulation (DBS), a surgical treatment that disrupts the abnormal brain activity which causes dystonia. >> TURN TO PAGE 4 TO READ MORE ON BROOKE’S GROUND BREAKING TREATMENT
CONTENTS
Welcome to 2017 and the Summer edition of Hands up for Our Children.
Welcome 2 Improving RCH imaging
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Congratulations Carla
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Brooke’s battle - cover story continued
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Life cycle
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Comings and goings
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‘Twas the season
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A unique opportunity for RCH nurses 7 Did you know
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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
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.
Inside this issue we introduce you to RCH patient Brooke and share her incredible story. This inspirational girl is one of the reasons Associate Professor Andrew Kornberg has decided to Fly for the Kids. This March, A/Prof Kornberg will circumnavigate Australia - flying solo! His fundraising mission is inspired by his courageous patients at the hospital, with all funds raised supporting the new Complex Movement Disorders Program at the RCH. You can find out more in our cover story. We also reflect on the year that was at the RCH, check in with patients to update you on their progress and introduce you to one very inspirational fundraiser, former RCH patient Ben who cycled from Perth to Melbourne, solo! I would like to acknowledge one of our greatest supporters, Strathmore Community Bank who were recently inducted into the Bendigo Bank Community Hall of Fame in recognition of their charitable efforts. Thank you so much for your support last year. As we move into 2017, I am very much looking forward to continuing to work with you to change the future of children’s health.
Warm regards, Sue Hunt Chief Executive Officer
Keep up to date with information from the RCH Foundation and join the conversation.
PS: Keep an eye out in February for our first ever Supporter Survey, where we are hoping to get to know you more and understand what inspires your support.
THANK YOU TO OUR NEWSLETTER SPONSORS
f RCHMelbourne t RCH_Foundation rch.foundation@rch.org.au 2 rchfoundation.org.au
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1 Nursery Avenue, Clayton Business Park Clayton VIC 3168 bluestargroup.com.au
337 Napier Street, Strathmore VIC 3041 bendigobank.com.au/strathmore
Improving RCH imaging Combining a SPECT gamma camera with a CT scanner, the state of the art SPECT/CT allows the RCH to capture two different types of images simultaneously, for the first time. It’s already having a big impact, supporting patients from across the hospital. SPECT stands for single photon emission computed tomography. With this type of scan, images are taken once a patient has been administered with a radioactive tracer, which is distributed to a specific area in the body. This tracer is then detected by a SPECT camera, which rotates around a patient’s body to produce a three dimensional image. CT or Computed tomography scans are obtained when an X-ray machine rotates around a patient to provide a three dimensional image of their anatomy. Duncan Veysey, RCH Deputy Chief Medical Imaging Technologist explains how the combined SPECT/CT Machine is able to take both of these scans concurrently, improving patient care at the hospital. “The combined machine enables us to overlay these two types of scans. We overlay the two scans so the image taken from the CT identifies exactly where the radioactivity displayed in the SPECT image is in a patient’s anatomy. This enables clinicians to more precisely locate a site of injury, disease or infection, and also potentially reduces the amount of anaesthetic and radiation patients are exposed to, by performing multiple tests during a single visit.”
Congratulations Carla! A big congratulations to RCH patient Carla on graduating from the hospital’s Complex Care Service! An RCH patient from the day she was born, Carla was the face of our 2015 tax time fundraising campaign. With a serious heart condition, a respiratory problem and an oesophagus that wasn’t connected to her stomach, Carla spent her first six months in the Newborn Intensive Care Unit. She was cared for by medical teams and specialists from cardiology, respiratory, haematology and genetics. Undergoing more than 40 surgeries and countless hospital appointments across several departments, Carla’s case was classified as ‘complex’. To better facilitate her care, Carla was enrolled in the Complex Care Service. Using a whole of hospital approach, the philanthropically funded service provided additional support to better coordinate Carla’s care and lessen the impact of her illness on her family. Now a bubbly five year old, Carla is going from strength to strength and her graduation from Complex Care is a significant milestone. “Carla’s graduation from the Complex Care Service marks a huge achievement for our family,” said Carla’s mum Joanne. “We are so proud of Carla’s progress and are forever grateful to the RCH and the wonderful and caring support.” 3
Brooke’s battle Cover story continued... DBS consists of an electrode implanted into a patient’s brain and a pacemakertype device called a pulse generator, which produces electrical impulses via the electrode that override the abnormal brain activity. Brooke is one of the first people in Australia to receive DBS and, though her initial results are remarkable, the effects are cumulative over a five year period. “Brooke has gone from being totally dependent on her family to doing things that she hasn’t done in six years, like walking,” said A/Prof Kornberg. DBS is one of the innovative treatment options that will be available through the RCH Complex Movement Disorders Program. The program is championed by A/Prof Kornberg and will greatly improve the lives of children and young people with conditions affecting their movement.
Brooke at the RCH with Mum, before DBS
Facilitated by a multidisciplinary team of neurologists, neurosurgeons, developmental medicine specialists, rehabilitation specialists, orthopaedic surgeons, and allied health professionals like physiotherapists, occupational therapists and neuropsychologists, the Complex Movement Disorder Program will provide innovative and intensive therapies that decrease pain, increase motor function and improve their quality of life. In March, A/Prof Kornberg will embark on a fundraising adventure like no other, raising funds through the Good Friday Appeal to support the Complex Movement Disorders Program and patients like Brooke. Fly for the Kids will see him circumnavigate Australia, flying more than 27,000km solo, all while fundraising to support the care of brave and courageous patients and families enduring the challenge of a severe movement disorder. “We all know that giving can change lives, so please join me on this trip to make a difference,” said A/Professor Kornberg. To donate and support patients like Brooke, or to learn more about Fly for the Kids, visit flyforthekids.org.au.
Brooke, age eight, playing baseball just before the full effects of her Dystonia set in
One doctor. One plane. One mission: to support The Royal Children’s Hospital. Donate today. Visit flyforthekids.org.au
Life cycle When former RCH patient Ben decided to fundraise for the hospital, he knew he had to go big or go home. So he did both, cycling 4,000kms from Perth to his hometown of Melbourne to raise over $8,100 for RCH cardiac patients. Covering tough terrain like the Nullarbor, this was a deeply personal challenge for Ben. At nine years old he developed complete atrioventricular block, meaning the electrical pulse in his heart became weak, hampering his circulation. Ben needed a pacemaker to survive.
COMINGS AND GOINGS
FAREWELL ROBYN Last December, the RCH Auxiliaries said a fond farewell to outgoing President, Robyn Anderson. For over three years Robyn successfully led the RCH Auxiliaries through a period of change and growth. Her passion and dedication to supporting sick children and their families was an inspiration to Auxiliary members and RCH staff alike. Robyn will continue in her role as Secretary for CasKids Auxiliary, which fundraises for the RCH Emergency Department.
“The RCH gave me the opportunity to live my life to the fullest, a gift for which I will be eternally grateful. At times when crossing Australia I found it so hard, but then I thought of all the other children who will never get this sort of opportunity, or do something like this without help from the RCH. Then, I could push on,” said Ben. By conquering this challenge, Ben thanked the RCH in a profound way and inspired others to support cardiac patients like him. “I’m extremely grateful to the RCH and its staff. This ride was my thank you for the years of care and comfort the hospital has provided to me, and many other children and their families,” said Ben.
WELCOME MIRIAM The RCH Auxiliaries are thrilled to welcome Dr Miriam Weisz as their new President. Miriam has a longstanding connection to the hospital, supporting the RCH Centre for Adolescent Health as Chair of its Development Board for 10 years. Miriam is delighted to continue her work with the RCH through Auxiliaries. In her first year Miriam hopes to meet as many of the Auxiliary members as she can. By understanding the work and commitment of these dedicated volunteers, she hopes that together with the Auxiliaries team, she can consolidate the lessons and fundraising outcomes of the last 95 years and build an Auxiliaries model that enables sustainable fundraising into the future. 5
‘Twas the season It was a very merry Christmas at the RCH and it’s shaping up to be a happy new year! Thank you to all who donated to our Christmas fundraising campaign, which shared the story of RCH patient Alex. Diagnosed with severe liver disease as a baby, Alex is now a thriving five year old after a life-saving liver transplant. Thanks to the support of people like you, Alex and children like her will continue to receive the world leading RCH care they need. If you haven’t donated yet, there’s still time! Visit rchfoundation.org.au/news to make your donation in support of our sickest and most vulnerable children.
Thank you for your amazing messages of support
Throughout the festive season, we received wonderful support from our corporate partners Kmart, Epicure and Transdev. For nearly a decade Kmart has been bringing the Christmas spirit to the RCH with a one-of-a-kind tree created in partnership with Christmas tree designers Dovecote. Gracing the atrium of the hospital, the tree incorporates native Australian flora and fauna, in keeping with the hospital’s interior design, and the names of the RCH patient wards. The tree bursts into song and the animals come to life every hour. Kmart also donates over 100 Christmas trees to brighten up the wards and family spaces across the hospital. Epicure also brightened up the hospital with a gingerbread replica of the RCH. With gorgeous detail they recreated the hospital exterior, the Creature sculpture and even the meerkats! The gingerbread hospital is part of the Gingerbread Village, where the RCH Foundation was the charity partner. Situated at the Melbourne Town Hall, the village included some of the city’s biggest landmarks like Luna Park, Melbourne Zoo and the MCG.
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Kmart, Pie d Piper an d commun up over 10 ity volunte 0 trees on ers helped the wards set and aroun d the hosp ital
Helping Melbournians make their way across the city, Transdev generously donated space on 300 of their Melbourne buses to promote our Christmas fundraising campaign. Their support helped to spread the word about the importance of helping our great hospital and kids like Alex.
Thank you for supporting us during such a wonderful and successful holiday season!
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Alex visited the Epicure Gingerbread Village
Posters and brochures featuring Alex were spoted on Transdev buses across Melbourne
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A unique opportunity for RCH nurses A chance meeting at a retirement function sparked a unique opportunity for RCH nurses. Former Brownlow Medallist and RCH Foundation employee, Bob Skilton, was engaged to speak at Jim Carroll’s retirement function. Jim mentioned to Bob that he had recently been appointed trustee of his beloved Uncle and Aunty, Donald Ratcliffe and Phyllis McLeod’s, estate. Donald and Phyllis wanted to support medical research in Victoria. Remembering how fond his Aunty and Uncle were of their nieces and nephews, and hearing about the hospital from Bob, Jim thought supporting the RCH would be the perfect way to honour their memory.
Research undertaken by the team so far includes investigating: •
What children are at greatest risk of developing wound infections after cardiac surgery
“Donald and Phyllis’ legacy is fantastic. It’s not right for kids to be ill and if what they have left behind makes some contribution to fixing that, then I’m sure that would fill them with tremendous pride and satisfaction,” said Jim.
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Strategies to assist families caring for adolescents with developmental disabilities entering puberty
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Investigating the use of Oxygen given to children post surgery and on the wards.
The estate funds The Donald Ratcliffe and Phyllis McLeod Director of Nursing Research. This position and the wider nursing research team “is all about making nursing outcomes better,” says Director, Fiona Newall. “We help nurses take the questions they have identified in practice, such as why something is done a certain way, or how we can we improve this process, and assist them to investigate it further. We then take their findings and use them to improve the care provided to our patients and families,” said Fiona.
“Our research is making a significant difference to the way care is provided,” says Fiona. Fiona and her team are incredibly grateful to Donald and Phyllis for their gift. “This gift has enabled us to significantly invest in our nursing team at the hospital. It’s a wonderful privilege to see how the questions nurses ask about their practice can make such a difference to the quality of care provided patients and their families, and it’s only possible thanks to Donald and Phyllis’ benevolence,” said Fiona.
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. 7
DID YOU KNOW? The past year was one of the busiest for the RCH, with many milestones, achievements and successes. Overall, at the hospital: •
88,654 children received urgent care in the Emergency Department
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255,150 appointments were held in the Specialist Clinics
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19,112 surgeries were conducted
The hospital also celebrated some significant milestones including: •
A record $17.4 million raised by the RCH Good Friday Appeal
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The launch of the RCH Electronic Medical Record
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The launch of the Australian Child Health Poll
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25 years of Music Therapy
Thank you for supporting the RCH and the many children who relied on its care over the past year. Here’s to a happy and healthy 2017!
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