Severely disabled Etac powerchair owner Jon Hastie seeks help to complete inspirational Duchenne Muscular Dystrophy film
Jon Hastie, 30 from Worthing, is a remarkable individual living with advanced Duchenne Muscular Dystrophy, who is desperately seeking help so that he can finish his inspirational ‘A Life Worth Living’ film and complete a life-long ambition.
Diagnosed with this progressive, muscle wasting and life limiting condition at the young age of three, Jon has still gone on to complete many amazing achievements in his life including a Bachelor’s Degree in Politics and International Relations, a Masters Degree in Environmental Studies and finally a Ph.D. in Government. He as works part-time for the Federation of Disabled People and campaigns regularly for the rights of less able people. Already surviving beyond his life expectancy for an individual with Duchenne, Jon has been inspired to produce a professional documentary-based film based on fellow extraordinary individuals living with Duchenne. Entitled ‘A Life Worth Living’, Jon’s film is 50% complete however he desperately needs to raise a further £20,000 of donations to complete this project which will inspire future generations living with Duchenne. Even though Jon is fully dependent on his Etac Balder F280 powerchair and needs a carer 24/7, he is determined to see his film published and entered into several film awards.
Jon explains: “The idea to produce this 60-minute film first came to me after watching ‘Darius Goes West: The Roll of his Life’. Made in 2005 by Logan Smalley, it details a 7,000-mile road trip across the United States by Darius Weems who also has Duchenne. He embarked on his amazing journey to promote awareness of this fatal disease and to raise money for research into a cure. Produced in 2007, this film inspired me to attempt something similar, as I believe life is worth living whatever your condition and Duchenne should not stop you from achieving your life goals. Compelled by the concept of achievement with Duchenne, I wanted my film to document my meeting with fellow people with Duchenne whilst highlighting the positive angle of their lives. For sure, we would discuss the daily challenges we all face, however my film was to clearly demonstrate to all affected by this disease now and in the future, that with Duchenne ‘A Life is Worth Living!”
In the Summer of 2010 Jon set about raising funds for this project and sourcing a suitable film producer and crew. He made extensive enquiries on Facebook and eventually discovered ‘Shooting People’ – an international networking organisation dedicated to the support of independent filmmaking. Through this group, Jon managed to meet the talented producer Annie Perkins and a suitable production crew who agreed to shoot the film for him. Jon then proceeded to make contact with fellow ‘Duchenner’s’ as Jon describes them from the UK and Holland to ascertain whether they would be interested in a role within the production. With several extraordinary individuals lined up to appear in the film and all his and the crew’s logistics resolved, all he needed now was one more element for the go-ahead, £50,000 of funding.
To raise £50,000 is a very tall order, but Jon was determined to reach this target so that making the film could become a reality. He comments: “Even though many people recognised my film will make a difference, raising this large sum of money was not easy. However with my own investment of £10,000 and kind donations from leading companies such as Etac UK and Brotherwood, charities such as Action Duchenne and the Muscular Dystrophy Campaign, and friends and family, I was able to raise enough money to complete the first half of the project. The support of my family and friends throughout this filmmaking project so far has been amazing. Without their help my dream would never have been possible and as I have very little mobility, my Etac Balder powerchair has also contributed greatly. As I have been fortunate enough to own one of these cutting-edge Scandinavian powerchairs for three years now, my quality of life has been much better especially in terms of comfort as it delivers so many different positions. Without it I’m sure my film-making venture would never have happened.”
Jon has just successfully completed his road trip around the UK and soon will be returning to Amsterdam so that he can meet his final interviewee. He has already met some remarkable individuals living with Duchenne including Ian, 26, a prolific artist from Wales; Carl, 23, who was voted ‘Mancunian of the Year 2010; and Mark from Edinburgh who works as a successful Graphic Designer and has reached the unbelievable age of 41.
Jon is still aiming, if he can achieve his final funding target, to release his film this September just in time for the film industry awards season. Jon Hastie - a truly inspiring positive person who deserves all the support in the world.
For further details or to donate to the ‘A Life Worth Living’ film project, visit www.alifeworthlivingfilm.com