Extraordinary People: The Boy Who Can Never Grow Old - Monday October 8

extraordinary people: the boy who can never grow old
21.00–22.00

Five’s acclaimed documentary strand continues with another batch of absorbing programmes exploring remarkable stories of human experience. Tonight’s programme follows 19-year-old Stuart Wickison, who is refusing to let the debilitating condition Duchenne muscular dystrophy (DMD) stop him from going to university.

DMD is a rare degenerative condition that affects boys, gradually robbing the sufferer of the ability to use all his muscles. Born healthy, boys with DMD will later begin to have problems standing up. As teenagers they will need wheelchairs and soon become effectively trapped inside their bodies. The incurable condition gets progressively worse until the sufferer’s heart and lungs stop functioning altogether, resulting in death. Young men with DMD do not live long into their 20s.

Incredibly, faced with this prognosis, 19-year-old Stuart Wickison has decided to go to university. Despite the fact that he is nearing the end of his life, Stuart’s determination to live as a normal teenager has never been stronger. He has decided to leave the comforts of Treloar College, a Hampshire college with a high level of specialist care for severely disabled young people, to study art. “I’m not here to suffer,” he says matter-of-factly. “I’m here to make an impact.”

Going to university will be a huge step for Stuart. At Treloar’s he has 24-hour medical support, can call upon physiotherapists at any time, and lives in an environment where people are accustomed to his needs. This support enables Stuart to live, so organising his care for university is a matter of life and death. The Treloar’s staff, with whom Stuart has become close during his three years at the college, are encouraging him to go and helping him prepare for this next step.

However, when Stuart leaves Treloar’s he will also be saying goodbye to four friends with DMD: Jonathan, Harry, Ben and Tyran. The five boys lost another friend, David, to DMD last year and have been campaigning for greater medical research funding to find a cure –something which scientists are coming closer to achieving. The boys head up to London to lobby Parliament, and meet families from all over the country who have been affected by DMD. The campaign is now in its fifth year and has made great advances in raising awareness and funds for research.

At the forefront of the research is Professor Dominic Wells, who has been involved in pioneering, cutting-edge research into gene transfer therapy. Unfortunately, developing a cure will be a long and complicated process –and Stuart knows that it is unlikely to happen in his lifetime. However, the campaign has given him a sense of shared purpose –and the knowledge that it could eventually help the younger generation of DMD sufferers.

Back at Treloar’s, the students are getting ready for the end of term. While his friends head out for a night on the town, Stuart must study: he has an A-level exam in a few days and a university open day to attend. However, staff are concerned as Stuart’s health is deteriorating: his ability to swallow is getting weaker and he is losing weight. Four days before he is due to begin university, Stuart has to have an operation to place a feeding tube in his stomach –but the doctors say that he can still start university as planned.

Stuart’s first day is a momentous one for him, as well as his mother, Mandy. “He’s been through a lot to get here,” she says proudly. Stuart is excited about taking the next step in his education and development. “It’s made me realise that there’s more to me than suffering,” he explains. “It’s enlightening to walk into a place and everyone’s looking at you and valuing you as an equal to everyone else –which I’ve never had before.”

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  • Anonymous

    Stuart is a wonderfully inspiring young man. Not to mention very good looking!

    What strength of character he and his family must have.

  • Anonymous

    This man has been the biggest inspiration in my life so far.

  • June Malone

    This was moving as well as interesting, and it made such a strong case for more Government funding towards the medical research for finding a cure for DMD.

    This lad Stuart’s positive attitude is truly inspirational and really helps get life into its proper perspective.

    I believe that if this type of programme were compulsory viewing in all schools – it would go a long way towards making our society less self-obsessed.

  • jacqui

    This documentary has had a profound effect on me since I viewed last night,I can’t stop thinking about Stuart, what a fantastic individual I wish him all the things he hopes for, I will always think of him througout my life, and I truley hope it will help me to become a less selfish person in my life and to be grateful for everything

  • Scott

    The documentary last night was one that moved me to tears several times. Stuart’s inbuilt self-esteem to carry on is so strong. I can sympathise & see what Stuart is saying, I myself suffer from Epilepsy – which I appreciate is completely different from DMD – but I have an outlook of my own since 3 continuous stages of Status gave me a massive heart attack back in 2006. My theology won me an award & if so many people could just take this on realising a disability isn’t a brick wall, it is a ladder that you climb & if a step breaks – so be it. You just step over & carry on up.
    Stuart I know you know what is coming but well done & Good Luck.

  • Erica

    I was moved to tears watching Stuart last night what an inspiring young man. Well Stuart as you said you are here to make an impact and I think you certainly achieved that, you touched thousands of people!

  • Sally

    I have also struggled with a disabling illness for the last fifteen years. I cried my heart out watching this programme because I could relate so much to some of the anguish Stuart has had to endure as a result of his condition. But seeing the courage with which he has clearly lived his life – and his courageous decision to make the documentary -has helped to renew my own sense of purpose and will to overcome life’s hardships. Thanks Stuart. You have made a difference. You are a wonderful and beautiful man – keep on fighting.

  • Adam

    I had the pleasure of going to both primary and secondary school with Stuart, I knew him before all of his problems had manifested, as well as when they began and how he coped with it. Before he got an electric wheelchair I could often be found pushing him around in one of his manual ones. Unfortunately we lost contact a few years back when we went to different places to do A-levels, and never really knew what happened to him. Think how amazed I must have been when I saw him in the TV guide!

  • tracey bancroft

    hi stuart i was nealy in tears when whatched you story it was anmazing and i would like to meet up with you.

  • Paul Barnett

    Like one of the previous posters I to have got to know stuart and although we moan about problems, we have nothing to moan about compared to what he is going through. He is one fantastic man. I have spoken to him and he very rarely has a negative word to say. May this guy live as long as possible.

  • Vicky Keeler

    Having lived with Stuart at Treloar’s for two years (and feeling as though I’ve known him a lot longer!) I know I can’t even begin to imagine what he goes through with the physical impact DMD has on his body.
    Suffice it to say, that DMD is the most common form of MD, especially at Treloar’s. Bad things happen to good people; why is this????

    I had an ex-boyfriend with DMD, and looking back, it was so horrible to watch him deterioate. Before leaving Treloar’s I knew Wicki (as he is affectionately known!) had breathing difficulties – but not so much so that food passed into his lungs!!!! (Which is what the film depicted!)
    My parents have met this incredible man called Stuart; I am truly proud to call him my friend. Hopefully, this film will highlight symptoms of DMD, what to look out for, and – although there is no cure as of yet – raise awareness of the disease.
    I can’t even begin to imagine how Wicki’s mother must feel; I know the defective gene which causes DMD is carried by the mother.

    (Good publicity for Treloar’s too!)

  • Anonymous

    After having watched Stuart I sat back in total awe, his strength and determine put everyone who cries over tiny obstacles to shame. Life is for living and Stuart lived life with dignity and honour. I can never imagine what it would be like being trapped in a body with limited time and having a goal knowing you may ever achieve it. I have told the story of Stuart to my children and have quoted ‘when you say I can’t it’s too difficult, remember Stuart, the word can’t didn’t seem to focus in his dictionary’. His mother should be proud to have had a son like him. Stuart was truly amazing.

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