Steven’s Story

Steven Croucher is like any other 19 year-old. He goes to school, likes to hang out with his friends and see movies. The difference is Steven does all these things in pain.

Diagnosed when he was young with neurofibromatosis, Steven lives with neuropathic pain every day. A genetic disorder, neurofibromatosis causes tumours and lesions to grow on or within the body where nerves are present. At the age of 9, doctors discovered a tumour on Steven’s brain stem – he needed multiple surgeries, chemotherapy and radiation.

Treating Steven’s brain tumour was not without cost. He was left with some balance issues and neuropathic pain, a type of chronic pain caused by nerve damage. But Steven has tackled his health issues head on, inspiring his family with his positive attitude.

“I was devastated when I found out, we knew it was a serious genetic condition,” said Gina, Steven’s mother. “But Steven has inspired me because is always so upbeat and positive.”

Looking forward is the only option for Steven, who is focusing on his studies with the goal of becoming a psychologist. “I have good days and bad days,” says Steven. “There are times when I feel like relaxing but I can’t because I have to keep going and studying. And there are times when my body just stops.”

Research into new medicines has helped Steven stay focused and work through his pain. “If I didn’t have these medicines I would feel a lot more pain than I do regularly. It helps me focus and concentrate because the pain is less.”

Steven started taking pain medication at the age of 10 and continues to work with his doctor to try new medications as they are discovered, find the right dose and combination to keep his pain at bay. But it’s not enough for him or his parents.

“Researchers need to keep working on this,” says Gord Croucher, Steven’s father. “There’s always a need to improve, and what works in one person doesn’t necessarily work in others.”

Steven finds hope in others who have lived through illness, including his hockey hero Saku Koivu. Both were given the same treatments and Koivu’s success in beating cancer was an inspiration to Steven. “When I was in the hospital I was able to meet Saku and it gave me hope,” says Steven who wants to help others in the same way. “I think if I didn’t have pain I could help others too.”

Steven’s parents are confident their son will continue with his studies and tackle the obstacles in front of him. Research into new pain medications is a part of that future, one that will help him live a normal life. “It would help to have something that works better than what I have now. Not only for me, but for others who need this medication too.”