Taking on tumours a tough ride
Matthew’s fight to raise awareness
OUSE boy Matthew Hall is finally getting the opportunity to live more like a normal 10-year-old after treatment for his rare genetic condition recently stabilised a tumour growing on his spine.
May is neurofibromatosis (NF) month and Matthew and his family are helping raise awareness for the lifelong condition that causes tumours to form on nerves in the body, including the brain and spine. NF can also cause cancer, blindness, deafness, as well as physical differences, learning difficulties and chronic pain. It has no cure.
The Ouse District School student was just one month old when his mother, Merryn, first started raising concerns about his health.
“It was the coffee spots on his skin … when we first got him home from hospital he had a really big one on his back and I was just told it was a birthmark,” she said.
“However, he kept getting them and I kept saying there was something wrong, but it took about five months before anyone really started listening and he was diagnosed.”
From the age of two, the tumour on his spine started to disrupt his daily life and his physical activity had to be limited.
“We had to limit his sports – he’s so active and he’s always on the go, but as soon as night would come he’d scream in pain,” Mrs Hall said.
After years of MRIs and doctors’ appointments failing to provide the cause of Matthew’s condition, it took a painful 18month trial of Trametinib to finally stabilise his tumour.
“It was absolute torture knowing your child has a large tumour and not a lot was being done,” Mrs Hall said.
“Since he started his treatment, he was getting increasingly sick with infections, but then the last MRI showed his tumour is stable.
“That’s the best news we’ve got in 10 years.
“He’s a normal 10-year-old and he’s loving life. But we are still living a life of uncertainty – we don’t know what tomorrow will bring.”