Watching her daughter Matilda, 7, play is a joy Eryn Bugden never takes for granted.
Born with tuberous sclerosis — a condition that left hundreds of benign tumours growing throughout her little body — Matilda has been in and out of Royal Children’s Hospital for most of her life.
A routine 36-week scan revealed Matilda had tumours in her heart, and a post-birth MRI showed there were also growths in her brain, kidneys and under her skin.
“They really didn’t think she was viable with life,” Ms Bugden said.
“The tumours were taking up 80 per cent of her heart.
“She’s got hundreds of tumours in her brain and has struggled with seizures her whole life.”
But Matilda has always been determined to prove the doctors wrong.
Since her diagnosis the now-grade 2 student has also battled through 19 rounds of chemotherapy for a desmoid tumour in her arm — a growth independent of the condition she was born with.
“We nearly lost her several times during that treatment,” Ms Bugden said.
Matilda uses a wheelchair and had to learn how to walk again after surgery on her hips.
And five weeks ago she had surgery to remove a tumour pressing on her brain in the hope of putting a stop to the seizures — a procedure which seems to have worked.
“Given what Matilda has been through, she’s healthy,” Ms Bugden said.
“She loves to play outside, play on the swings. She loves her Lego and Duplo and to colour and draw.
“She plays wheelchair basketball and wheelchair tennis weekly at the hospital.
“Really for the first time she fits in.
“She’s had to fight and she’s had to have a team in her corner fighting for her.
“But here we are, eight years later.”
It’s thanks to the work of those at the RCH, which is supported by the Good Friday Appeal, that Matilda can enjoy being a kid again.
Originally published in the Herald Sun, April 6, 2020
Words: Alanah Frost
Images: Alex Coppel and David Caird