“A LIFE WORTH LIVING”: Duchenne sufferer shows the rest of us

Last night (3 April 2012) I saw a report on TV news (Channel 4 News in the UK; see below for link) that might change my life. At the very least it has caused me to re-evaluate how I spend my life. I bet it will have had a similar effect on many people.

This kind of report is one of the reasons why Channel 4’s is the only news bulletin I watch regularly; and one of the reasons why it wins broadcasting awards on a regular basis.

Making the most of life

We met Jon Hastie, who was diagnosed when a child with Duchenne muscular dystrophy, which gradually destroys muscle function. Many sufferers die in their teens; Jon is now 31 and determined to make the best of his life; both now and for as long as he has. Despite being so disabled that he is permanently wheelchair-bound and can do almost nothing for himself (“I can’t even scratch my own nose”), he can speak and he can control a mouse. With these tools he has earned a degree, a Masters and a PhD. That got my attention.

Mission to inspire

 Jon Hastie’s physical life has been dominated by his condition; but not his mental life. Obviously he’s an intelligent man, or he wouldn’t have got those degrees; but he is also one of the most positive men you could hope to meet. His message at the end of the report was: “As long as you can communicate, it’s important to keep going” – and he’s a great communicator. He’s decided to produce a film called “A Life Worth Living”; a kind of road movie in which he travels to meet Duchenne suffers and questions them about their lives. The purpose, he says, is to “inspire those living with Duchenne and those who’ve never heard of it.”

He meets a family with a young son who has been diagnosed with Duchenne and it’s hard to watch the face of the boy’s father as he talks about the moment they heard the diagnosis. Driving away, Jon clearly moved, says how helpless he felt: “I just wanted to hug them. But I can’t even do that.”

The excellent interviewer Katie Razzell asked, “When was the last time you could hug someone?” Jon replied with a smile, “About ten years ago.”


How cheerful, positive, inspiring was this man. He reminded me of some others I have known who dealt uncomplainingly with life-threatening conditions: a  friend who was disabled by multiple sclerosis for years; then, in case that wasn’t enough, died of a brain tumour. Then there were two close friends of mine who have died of colorectal cancer; and countless stroke survivors I met when I worked for a stroke charity. I never heard any of these people complain about their condition.  Maybe it’s the really big health challenges that demand and bring out the best in people.

Which brings me back to Jon Hastie’s words: “Make the most of the time you’ve got. As long as you can communicate, it’s important to keep going.”


The report on Channel 4 News: http://www.channel4.com/news/duchenne-and-a-life-worth-living

Jon Hastie’s film: “A Life Worth Living: pushing the limits of Duchenne”: http://www.alifeworthlivingfilm.com/


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