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Sussex film-maker's documentary focus on muscular dystrophy
A film-maker who travelled the length of the country to interview men living with the same muscle-wasting condition he was born with is hoping his documentary will “rewrite boundaries” for severely disabled young people.
Jon Hastie, 32, from Shoreham, set out in 2011 to meet productive, creative and fulfilled men living with Duchenne muscular dystrophy.
They included a poet, author, graphic designer, artist, two campaigners and a concert organiser.
He captured his experiences for his first documentary, A Life Worth Living, released on DVD this week.
Copies are being stocked by muscular dystrophy charities the Muscular Dystrophy Campaign and Action Duchenne, which contributed funding for the making of the film.
All sales made through the Muscular Dystrophy Campaign will help fund its Trailblazers young disabled campaigners group.
Trailblazers was set up to empower young disabled people to challenge social issues that affect them.
Mr Hastie has been left with little mobility, using a ventilator at night and requiring around-the-clock care.
The condition causes muscles throughout the body to weaken and waste over time.
He resolved to undertake the project, which he describes as the most “intense challenge” of his life, to encourage the ambitions of children and teenagers with Duchenne and other severe disabilities.
Mr Hastie said: “This project has been all about demonstrating just what can be achieved by people living with Duchenne and other severely disabling and life-limiting conditions.
“There are so many remarkable, spirited people out there who have so much to offer.
“Disability presents both physical and mental barriers. We need to be showing the younger generation what can be done with tenacity and encouraging them to aim high.”
Tanvi Vyas, a campaigns officer for Trailblazers, said: “We are proud that Jon has decided to use sales of this film to help Trailblazers, which also sets out to encourage young people to challenge themselves and to remind them what is possible with determination.”
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