Posted 30 May 2023
Cheryll knew from early scans during her daughter’s pregnancy, that her grandson Matty wasn’t developing as expected.
“They did some tests at our hospital in Tasmania when he was about a month old, but we didn’t find out until two months later that he had Fanconi Anaemia.”
Fanconi Anaemia is a rare genetic disease that typically leads to a loss of blood production and requires a life-saving bone marrow transplant during childhood. People with the disease have an increased predisposition to congenital abnormalities, and cancer in later years.
Cheryll said they told Matty about his condition when he was about eight years old, when they organised for him to go to a camp for people with rare diseases.
“We told him he was going to meet other people that had the same disease as him. I don’t think he really believed there were other people like him until he got there, but once he met the other kids and families, he felt like he had truly found his tribe.
“I try to get his younger brother Nate to participate in as many activities with Matty as possible, and we could see that the camp helped him understand that there were other families with children like Matty.”
Matty is thirteen now, and Cheryll says Matty has started talking about cancer more as he’s gotten older. “We’re just waiting for that diagnosis.”
Despite Matty’s condition, he leads a normal teenage life.
“Anyone who’s met Matty knows he loves a chat, and he’s quite outgoing” Cheryll says with a laugh.
“He attends a phenomenal support school; he has autism, and battles a bit with numbers, but his communication and reading skills are at the grade 12 level.”
Matty wears a hearing aid, has a special chair at school to raise him up and down to get his arms close to his desk, and has a motorised wheelchair, due to his hip dysplasia.
But his devices don’t do all the work – Matty does gymnastics at school and goes to an external gym twice a week, to help with his balance. He also swims to help with his muscles and works with an occupational therapist. Throw in his medical appointments, and you can see Matty’s schedule is both full, and challenging.
Cheryll, Matty and Nate recently visited SVI to attend the FASA (Fanconi Anaemia Support Australasia) Family Day conference at SVI.
“We did the lab tour and just loved it. Everyone is so lovely and makes you feel like you’re part of something,” Cheryll says. “I admire immensely the ‘young gun’ researchers at SVI and encourage them to keep dreaming big.”
They just need to look at Matty, and he’ll keep their dreams flowing.