COLAC’S Twilight Marson says she would have been wheelchair-bound and unable to communicate without the staff at Melbourne’s Royal Children’s Hospital.
The 16-year-old was born with Larsen’s Syndrome, a rare congenital disorder which affects the development of bones and joints.
Twilight, daughter of Kate Marson and Al Mustapha Al Shahid, was born with dislocated hips and elbows, knees which faced the wrong way and ankles that tilted inwards.
She also had a cleft palate, where a part of the mouth failed to join up, making it hard to speak.
Twilight said she had had 10 surgeries in her life, most of which were at Melbourne’s Royal Children’s Hospital.
The most recent surgery was last month.
“In my 16 years, I’ve spent maybe a whole year in that hospital,” she said.
“Because of all the work they’ve done at the end of last year, I was going to the gym and I’ve built up a lot of stamina, whereas usually I would’ve never thought of doing something like that.”
Mr Al Shahid said hospital staff, including surgeons Dr Leo Donnan and Dr Chris Harris, helped his daughter through the “disempowering experience” of having surgery which left her completely reliant on others.
Twilight had nearly three weeks away from school in March for an osteotomy operation to re-align her left leg.
She returns to the hospital once a week for check-ups.
“One of the primary concerns is her education isn’t disadvantaged too much by having time off,” Mr Al Shahid said.
“With an operation like this, there’s a whole team of people – physiotherapists, occupational therapists, an orthopaedic team and an education team,” he said.
“A teacher’s been dropping by, we’ve had visits from home nurses to do all the dressing and adjusting the pins, and someone comes around to help her with hygiene.”
Twilight said she wanted to inspire people to donate to tomorrow’s Royal Children’s Hospital Good Friday Appeal.
“They’re all very kind and caring; a lot of them are very empathetic and they care about how you feel,” she said.
“The new hospital rooms are really good, it allows one parent to be in the room with the child at all times.”
Twilight said the hospital’s work meant she could have a normal life.
She’s an actress with the Colac Players and Red Door theatre groups, and she studies two Year 12 subjects alongside her Year 11 classes at Colac Secondary College.
Twilight said surgeons would remove pins from her leg in four months, and she hoped to one day walk in high heels.