A DISABLED man from Worthing who defied the odds by reaching 30 years old with a life-limiting muscular condition had his documentary played in Parliament.
MPs, Peers, and people with the condition, gathered earlier this month to watch Dr Jon Hastie’s video about living with incurable Duchenne muscular dystrophy.
Jon, 31, of High Salvington, travelled the UK and Europe to speak to people with the condition – and after his journey made a documentary called A Life Worth Living.
Jon said: “As I approached my 30th birthday, my deteriorating health made me realise there are more years behind me than ahead.
“But I’m not dead yet, and I’m determined to document just what can be achieved by people living with Duchenne muscular dystrophy.”
Jon said he wants the film to inspire those with the condition “to push the limits of what they can achieve”.
Duchenne muscular dystrophy almost always affects boys, and causes muscles, including those of the heart and lungs, to weaken and waste over time.
Jon said the next thing he wants to do is enter film festivals to raise awareness of his project, and the condition in general.
Jon decided to take on the project on reaching his 30th birthday, a milestone that few of those born with Duchenne muscular dystrophy live to see.
“This film aims to inspire a new generation of people with Duchenne muscular dystrophy to show what is possible,” Jon added.
“But, it is also for the rest of the world, and [to show] just how valuable life is and the remarkable feats that can be achieved by disabled people with the right support and opportunities.”
The documentary was produced last year, when Jon set out to meet people across the UK and Europe who “push the limits”, and his journey saw him meeting artists, novelists, campaigners and music promoters.
The making of the film in itself was a major achievement for Jon, who has very little mobility, requires around the clock care and uses a machine to help him breathe.
Nic Bungay, one of the funders behind the documentary, said: “With his documentary, Jon has produced an inspirational, account of life for men living with Duchenne muscular dystrophy. I hope that after viewing Jon’s journey, the message that will be taken away by MPs is that severe disability does not have to be a barrier to an independent and fulfilling life.”
To find out more about A Life Worth Living visit: www.alifeworthlivingfilm.com