AMY and Jack O’Rourke were told after their son William’s MRI scan that no news was good news.
“We hadn’t heard from the hospital after more than 48 hours, so we popped a bottle of champagne,” she said.
“Then we got the call asking us to come in: he had a tumour in his brain where his two optic nerves meet.”
William, aged three, has neurofibromatosis (NF), which causes tumours to grow in the brain, spinal cord and nerves. There is no cure.
Mrs O’Rourke described the genetic disorder as a “ticking time bomb”.
“NF can vary between different people so we don’t know how it will affect him into the future,” she said.
“All we know is this is how it is manifesting at this point.
“Generally they fall behind in one area and for William it’s language.
“Some people get cutaneous neurofibromas [small bumps] on their skin, but usually not before puberty.”
The family will participate on Sunday in the Cupid’s Undie Run from Nobby’s Beach Surf Life Saving Club.
The 1.5 kilometre event encourages runners to either bare all and run in their underwear or don a costume to help raise $500,000 for the Children’s Tumour Foundation of Australia.
About 20 family members and friends have raised almost $5000 as a team called Walk For William.
“We want to be able to take Will each year and celebrate his differences and show him that people are like him – and there for him,” she said.
“NF is more common than cystic fibrosis or muscular dystrophy but is just not known about.
“That lack of knowledge leads to lack of research funding – Will could easily participate in research, but there are no projects in our area.
“We also want to raise awareness about NF so we can have conversations about it and make it a less painful journey for families.”
Mrs O’Rourke said William was six months old when she noticed a few brown freckle-style markings known as café-au-lait spots on his back.
She thought they may be birth marks – but then they started to spread.
“I was in denial,” she said.
“NF can be so many different things, from learning difficulties to malignant tumours and growths.
“Will was a bit delayed in terms of walking and milestones and I thought ‘These are things we can cope with’. Tumours are another story.”
He will have a second MRI scan next week to check if the tumour has shrunk and whether chemotherapy or radiotherapy is needed.
“The life you see for your child changes and isn’t what you thought it would be, but there are some things you just can’t prevent,” she said.
“The best thing we can do is show him how to cope with his life how it is and not to hide.
“We’re just taking it one day at a time.”