A Life Worth Living: Carl Tilson4 June 2011
Jon Hastie, 30, has Duchenne muscular dystrophy, an incurable condition which means he requires 24 hour care and uses a machine to help him breathe.
On Saturday 21 May 2011 he began a journey that would take him across the UK and through Europe documenting the lives of people affected by the condition. He hopes the documentary "will be an inspiration to young men diagnosed with muscle-wasting conditions."
His documentary took him to Manchester to interview Carl Tilson. Carl recently received the 2010 Mancunian of the year award, beating celebrities such as Gary Barlow and Ryan Giggs, for his work raising over £100,000 for the Action Duchenne charity. He has also directly urged the Prime Minister and health ministers to fund trials into finding a cure, and continues to campaign. He has a famous footballer grandfather, Samual Frederick Tilson, who played for Manchester City Football Club and for England in the 1930s.
What is your name, age, and where do you live?
24 Years Old (13/02/87)
When were you diagnosed with Duchenne?
I was diagnosed at five years old after having had problems falling over and unable to keep up with the other children, also I had difficulty going up a flight of steps. A muscle biopsy at the Manchester Children's hospital confirmed my diagnosis.
When did you first go into a wheelchair?
I went into a wheelchair at 8 years old, my legs getting much more tired and fatigued.
What do you do throughout the day?
I like to keep myself occupied with volunteering for charity related to Duchenne, that's public speaking, charity advocacy, helping to organise fundraisers and motivating the Duchenne community.
On a typical day in my free time I like gaming, listening to music and social networking online, sometimes I like going to the cinema and playing ten-pin bowling using those accessible ramps.
How do you cope with the day to day issues of DMD?
It's quite difficult living with Duchenne muscular dystrophy mentally more than physically. You have to be mentally strong. I have my off days like everybody else, like depression and anxiety, however my determination has pulled me through every obstacle.
I cope by music meditation. I mainly start with music like Linkin Park to release my anger then switch into a sort of soft music with inspiring lyrics, it motivates me. Positivity and determination plays a huge part in coping with this condition.
Tell us about your family/friends - who do you live with, do you have any brothers or sisters?
I live at home with my parents. My mother has been married once before having had two boys and one girl which later she divorced met my Dad then later had me. So I've got two half brothers and one sister. I have met lots of friends, a few I've known since nursery, some have moved on and some remain.
What do you feel is the biggest achievement in your life so far?
I have achieved many great things from becoming Mancunian of the year and helping to raise over £100,000 for Duchenne research, but there is one achievement in particular which is a personal achievement.
I contributed to organising a charity luncheon at Manchester City Football Club on my 22nd birthday in 2009 raising over £30,000 which had seven times women's wrestling champion and Canadian television personality Trish Stratus one of my inspirations come from Toronto, Canada to join in the celebrations.
If you could change one thing in your life (except for having DMD), what would it be?
To be able to eat foods again by having a stronger swallow without relying on my feeding tube for nutrition.
What assistive technology do you use?
Electric wheelchair, Ventilator (day/night), Environmental control with a button, Cough Assist machine, On-screen keyboard via personal computer
Are there any goals you still want to achieve in the future?
To appear on ITV This Morning show to raise awareness about Duchenne on a national level
To find a girlfriend who loves me for me
To write a book about my life and experiences
You can help Jon Hastie complete his ambitious journey by donating the cost of your daily commute at www.alifeworthlivingfilm.com. He travels to work in a specially adapted car and uses a specially adapted powered wheelchair to get around. He would 'love to be able to walk to work every day, even in pouring rain' and asks that you walk to work and donate the cost of the commute.