A MAN with a severe muscle-wasting condition has been named the most inspiring person of the year at an awards ceremony.
The prize was claimed by Jon Hastie at the Muscular Dystrophy Campaign’s national conference in Nottingham.
He was honoured for his documentary film, which chronicles the daily challenges of young men with Duchenne muscular dystrophy.
The 30-year-old, of Furze Road, High Salvington, has the condition, which wastes and weakens the body’s muscles, including the heart and lungs, and wanted to inspire the next generation of sufferers by making A Life Worth Living.
He spent several months travelling up and down the country interviewing young men with the condition, and recruited a film crew and gained funding for the project.
Jon said: “I’m honoured to receive the award for most inspiring person.I have known many inspiring people with Duchenne muscular dystrophy in my life and I am delighted if I can give to others a fraction of what others gave to me.”
Sue Barker, the charity’s president, presented Jon with the accolade and said he had “gone above and beyond in the name of charity”.
Robert Meadowcroft, the chief executive of the Muscular Dystrophy Campaign, said: “Life can be extremely tough for people with Duchenne muscular dystrophy and I have no doubt that seeing Jon achieve his dream of making this film will inspire boys and young men with this condition to achieve equally amazing things in their lives.”
As previously reported in the Herald, Jon is currently involved in a battle with NHS Sussex, the area’s primary care trust, which has so far refused to fund a vital piece of equipment for him.
His ability to cough has become severely impaired, putting him at great risk from coughs and colds, which can develop into pneumonia.
He applied to NHS Sussex for a £4,000 cough assist device which should help the problem, but it was turned down by the funding request panel.
Without a cough assist machine, Jon said he would need to admit himself to Worthing Hospital, which has one of the devices, each time he suffers respiratory problems.
Lack of effective treatment could lead Jon to need a tracheotomy which would cost the NHS between £70,000 to £90,000 a year in full-time care from nurses.
He appealed that decision, and should hear next week whether it was successful.