The Boy Who Can Never Grow Old
8 October, 9pm
Star rating: 4/5
This documentary charts the extraordinary courage of 19-year-old Stuart Wickison, who has Duchenne muscular dystrophy, writes Vanessa Casey. Although Stuart is barely able to move and facing death, he is determined to follow his dreams.
Each year in the UK about 100 boys are born with the genetic condition. With no cure available, life expectancy for boys with DMD is about 20.
As Stuart prepares to leave the comforts of Treloar’s – a school and college for young people with severe disabilities – to study art at university, his determination to lead life as any other teenager has never been stronger.
This is a huge step for Stuart. At Treloar’s, he has 24-hour medical support, physiotherapy and lives in an environment where people are accustomed to his needs. Now he will have to organise many of the services he has previously taken for granted.
Students at Treloar’s are encouraged to live life as normal teenagers they go clubbing, pubbing and have sexual relationships. But sex isn’t easy when you can’t move your body and need two carers to assist you.
The film joins Tyran Hawthorn, who also has DMD, and Leanne Tasker, who is disabled, as they seek help to further their relationship. It’s not easy when a private moment becomes a public moment. With Leanne leaving at the end of term, and Tyran’s health deteriorating, it’s an emotional time for both.
The documentary follows the DMD teenagers as they go to London to lobby parliament for more research funding.
Professor Dominic Wells, one of the world’s leading scientists in gene transfer therapy, has been able to heal muscles damaged by DMD in mice. The boys are campaigning for money to fund human trials, even though it’s unlikely that a cure will be available in their lifetime.
For Stuart’s parents, his move to art college is stressful. They’ve cared for him all his life and known that he was going to die early since he was three. Now, they have to let him go. But for Stuart, it’s the only option.
Vanessa Casey is director of external affairs at Treloar Trust.