All grown up: The young lives changed by the Royal Children’s Hospital
LITTLE Pandora Humphries won hearts everywhere when she was the face of the 2006 Good Friday Appeal. See how big she is now as we revisit four young people who are thriving thanks to the Royal Children’s Hospital and the generosity of Victorians.
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AHEAD of the Good Friday Appeal, we revisit four young Victorians who wouldn’t be where they are today without the expertise and support of the Royal Children’s Hospital.
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MATILDA PHILP
MATILDA Philp was too young to remember what she was thinking as she reached for her toy that had slipped into the running bath and floated towards the gushing tap.
In the couple of seconds her mum, Moira, looked away, the then two-year-old Matilda had fallen in the scalding bath.
Now, a decade on and with her most recent surgery at the Royal Children’s Hospital complete, Matilda can look at the photos of herself as a bandaged toddler — published in the Herald Sun in 2008 — and appreciate the work of the hospital.
“There are lots of friendly people there, and lots of fun activities. They try to make it not a scary place,” Matilda, 12, says.
She suffered burns mainly to the left side of her face, ear and along her shoulders.
But what the nursing staff hadn’t yet realised was that as Matilda tried to get herself out of the bath, she had swallowed the scalding water, causing serious burns inside her throat. A cluey nurse noticed her laboured breathing and ordered further investigation.
“It’s not something they usually check for. They would if it had have been a house fire,” Moira says.
Matilda was rushed to ICU, where she remained for a week, and had an emergency tracheostomy to allow her to breathe.
Matilda spent five weeks in hospital and needed skin grafts on her neck and shoulders.
“They are so good there. Everyone from the social workers to the therapists, nurses and clowns, they are so specialised to children and their needs,” Moira says.
It became apparent over the next few years that Matilda’s left ear could not be saved.
The plan was to have reconstruction surgery, using rib cartilage to build a new ear, before Matilda started high school. RCH plastic and reconstructive surgeon Sian Fairbank also wanted to ensure the surgery took place when Matilda was emotionally and mentally ready.
When it was raised with Matilda this time last year, as she started grade 5, it was clear to her parents she wasn’t ready.
Moira suggested that it could be good for Matilda to stand up in front of her class and tell them what she was about to have done.
“One day she said to me; I know what I’m going to tell my class now. That’s when I knew she was ready,” Moira says.
Having recovered from the surgery at the end of last year, Matilda is looking forward to pouring her energy into her hobbies — surf lifesaving, netball, cricket, football and swimming. “It’s changed my life a little, but not too much,” she says. “It’s easier to wear glasses now with two ears.”
DAVID MACPHERSON
AS a patient at the Royal Children’s Hospital for his entire childhood, David MacPherson has experienced the benefits breakthrough medical research can make to a patient’s life. But he has also tasted the helplessness of just how far away other cures and meaningful treatments can be for those living with incurable conditions today. Now, as an adult, he is working to change that.
The 18-year-old was diagnosed with Duchenne muscular dystrophy when he was in prep.
It wasn’t until David reached the end of primary school and needed to start using a wheelchair that he realised he was dealing with a serious degenerative muscle disease.
“I could walk fairly normally when I was younger, so until then I just took it as normal,” MacPherson says.
“Being in a wheelchair I’m a good observer of people, so I more often internalise things than want to talk about them.
“I don’t remember asking about my condition, but one day in grade 6, I remember thinking more seriously about it, about what would happen to me as an adult, and I decided to Google it.
“When I looked it up it was quite serious in terms of a shortened life span. I’ve just got used to that fact, and it doesn’t bother me anymore.”
MacPherson has instead set his mind on what he can control; pouring his efforts into studying for a career that will allow him to one day make a difference in medicine, and also helping raise money to support those working with sick children now.
His VCE dedication saw him achieve one of the top ATARs last year in Victoria of 98.85, earning him a place studying a Bachelor of Science Advanced Research at Monash University.
It’s a more comprehensive version of a standard science degree for high-achieving students intending to pursue a scientific research career.
He enters the field of medical research at a time when advances into his own condition include exon skipping, gene therapy and gene repair techniques — with human trials underway for many of these potential therapies — possible future treatments that were not even conceivable when he was diagnosed.
“It’s my condition that has given me a greater appreciation for how much medical professionals can change our lives,” MacPherson says. “It’s given me the motivation to do research. I like the idea of helping people through science.”
Three times a year he will have a check-up at the RCH’s neuromuscular clinic — where he sees all his specialists from neurology, cardiology, respiratory and physical therapies in one afternoon.
Each time, he sees his main doctor, neurologist Associate Professor Andrew Kornberg. It is more than a doctor-patient bond that has formed after 13 years — MacPherson says it is a genuine friendship.
MacPherson has one more appointment at the RCH until he transitions to an adult hospital. It’s a period that has allowed him to reflect on the friendships made with his doctors, the innovative ideas his therapists have had for mobility equipment to make everyday life easier, and for the fun distractions such as the Starlight Room that have helped him feel comfortable
at what has become his second home.
To say thanks, MacPherson will again join his former Yarra Valley Grammar classmates — just as he has for the past four years — to doorknock the Ringwood area to raise money for the RCH’s Good Friday Appeal.
“The thing I’ve appreciated about the hospital is building an actual friendship with my doctor,” he says. “It’s really important for kids to regularly see the same people so hospital doesn’t become a scary place.
“The whole neuromuscular team is all supportive and it’s quite obvious they want the best for me. They’re always respectful and I’m allowed to have my say.”
JACOB MIBUS
THE world is at Jacob Mibus’ feet, with a new leg seeing him step straight into the record books.
Jacob was seven when a lawnmower ran over his foot on Father’s Day on the family sheep farm near Dunkeld. Royal Children’s Hospital doctors told his parents, Trevor and Kathy, that if they tried to save his foot, it would take multiple operations over many years, and Jacob would most likely be in pain for the rest of his life.
Or, if they amputated to allow him to be fitted with a prosthetic leg, he’d be running around by Christmas three months later.
And he was.
“You just need to believe in everything they say and trust them,” Trevor says.
The Herald Sun featured Jacob in 2012, just as he was starting to excel at inter-school athletics competitions while wearing his “walking leg”, a more rigid prosthetic leg with a flat foot.
It never stopped Jacob, now 16, enjoying sport. All through primary school he participated in athletics, before taking up football — most recently with Penshurst’s premiership-winning football side. While he has needed a new prosthetic leg each year to keep up with his growth, Jacob has broken a few playing basketball with his mates. He rides his bike and helps out on the family sheep farm.
“Because he was so young, the doctors told us he’d learn to do all the things in life with a prosthetic leg. Until then, he’d never played football, cricket and basketball, so he’d start afresh with a new leg,” Trevor says.
But for the past two years, Jacob has taken a break from the athletics track. A mix of growing pains, knee troubles and general disinterest saw him lose his passion for the sport.
It has been the gift of a new running blade, funded by the START Foundation, that has given Jacob a renewed drive.
The first time he raced with the new leg, at the State Junior Para Track and Field Championships in Melbourne four weeks ago, he smashed three personal best times in the 100m, 200m and long jump. Not only was he winning the events based on the classification calculations, but he was physically beating the field across the line.
At the National Championships in Sydney last week, he took home a silver medal in the long jump, performed personal best times in the 200m to finish fifth in the final, and clinched a personal best time to seal fourth place in the 100m sprint — all in the under-20 division.
The National Disability Insurance Scheme will soon allow him to get his first water-proof leg — allowing him to shower in the change rooms with the rest of the team after football,
or to walk straight into the water at the beach — as well as an all-purpose sports leg.
Jacob says he is at an age where he can appreciate that the accident has changed his life, taking him to incredible places and people he would otherwise never have met.
“I want to go as far as I can,” he says.
PANDORA HUMPHRIES
SHE touched the hearts of Victorians when she was photographed on her first birthday at the Royal Children’s Hospital, becoming known as the “Butterfly Girl”.
But after spending more than the first two years of her life in hospital or isolation, 13-year-old Pandora Humphries has spread her wings. She has swapped regular hospital visits for the teenage staples of sleepovers, horse rides and social media.
Pandora was born with a still undiagnosed condition, where her blood cells attacked each other. She needed countless blood transfusions as a baby, before a bone-marrow transplant at 18 months of age. It saved her life by effectively giving her a new immune system.
The stunning photo of Pandora on the RCH ward saw her become the face of the Good Friday Appeal in 2006. At age seven, she was one of the children selected to meet the Queen when she toured the new RCH for its opening.
Mum Amber Hendry says she felt the family has put the darkest days of Pandora’s health battle behind them, and her daughter could now forge her identity as a young woman on her own terms.
“When we lived in Point Cook everyone knew her as the sick kid, as the Butterfly Girl. When we came over to Cranbourne and started her at a private school, no one knew her. It was quite wonderful that she could start fresh,” Hendry says.
“Her close girlfriends accept her. She’ll take her needle on a sleepover, she’ll take her tablet. She’s not distressed having to do that in front of her friends. She’s quite proud of who she is.
“Without the RCH I wouldn’t have a child. It’s as simple as that.
“And now she can concentrate on hanging out with friends, social media, selfies; that’s the stuff that makes teenagers happy.”
EVERYTHING YOU NEED TO KNOW
The Kids Day Out is on Good Friday at the Melbourne Convention and Exhibition Centre, 10am-5pm. Take your favourite soft toy for a check-up at the Teddy Bear Hospital, enjoy rides, games, art activities and sports.
The Henley and Villawood Properties No Reserve Auction will see a five-bedroom home go under the hammer at 2pm on Friday at 13 Harfield Ave, Waratah Estate, Mickleham.
The Kick for the Kids football match between North Melbourne and St Kilda is on at Etihad Stadium at 4.20pm on Friday.
To donate or volunteer go to goodfridayappeal.com.au
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