Like most 15-year-olds, Jason Thornton from Sale likes to relax with his friends and enjoys going different places. And although he still manages to do this now, soon it will become impossible as a progressive muscle wasting disease takes the last of his ability to manage a few steps on his own or bear his own weight.
To be able to live the life he wants, Jason needs a portable hoist to help move him from his chair onto sofas, beds, baths and toilets – and back again – which would give him the freedom to not only access every area of his own home, but leave it too. With a portable hoist he would be able to continue visiting friends and family, go on day trips and holidays; to have new experiences.
However, the portable hoist Jason needs costs £1,945, which is beyond the family budget – and there is no help available from statutory services. In desperation the Thornton family turned to Newlife the Charity for Disabled Children for help. Newlife is the UK’s leading charity provider of specialist equipment for children with disabilities and terminal illness. The charity is currently working with 28 families in Greater Manchester with equipment needs of £47,698.
If you would like to help Jason keep his independence and freedom for as long as possible, go to www.newlifecharity.co.uk/greatermanchester and click on the Donate button next to his story.
Jason’s parents Dawn and Russell were told that Jason, their youngest child, had Duchenne Muscular Dystrophy when he was just three years old. Characterised by progressive muscle degeneration and weakness they are now facing the prospect of him losing the use of his legs in the very near future.
Mum Dawn said: “At the moment he can just about bear his own weight and walk a few feet, but it’s laboured. It is pure determination and grit which is keeping him on his feet, but we are now trying to get things in place for the inevitable, which will happen in the very near future.”
The steroids Jason takes to help manage his condition have caused him to gain weight, which makes it difficult for his parents to lift him, and although there is tracking for a ceiling hoist between his bedroom and the bathroom, there is nothing downstairs to help move him.
Dawn added: “Jason is upbeat, positive and generally cheerful, there isn’t a lot of negativity from him which we have really encouraged and we have tried to give him the skills to help him cope. He also has a good friendship group and at the moment they all go to school together, with Jason whizzing about in his wheelchair when the weather is good, which gives him independence.
“Once Jason loses the ability to weight bear we won’t be able to go out for long as he won’t be able to get out of his wheelchair, but if we have a portable hoist which is compact enough to take out it will help him maintain his freedom, help him to do everything he is used to doing, to carry on with family life.
“Jason’s sister, Melissa, is at Newcastle University and it is hoped that his brother, Simon, 18, will got to university later this year. With a portable hoist Jason could visit them. Without it life will be very restricted.”
Newlife guarantees that 100 per cent of monies donated or fundraised in Greater Manchester will be used to specifically help children with disabilities and terminal illness in the area. Any money raised above the requirements for Jason will be used to help other local children. Newlife has already helped 480 children in Greater Manchester, with equipment totalling £405,315.
Newlife is currently receiving more applications for help than at any time in its 25-year history, which is why public support is needed to support families caring for disabled and terminally ill children in Greater Manchester. The Newlife website includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email [email protected] – and shows specific ways people can help support local children with disability and terminal illness and their families.
If you would like to find out more about how you can support families in Greater Manchester, Regional Fundraising and Awareness Manager Claire Kelly would like to hear from you. Call her on 0749 4490 561 or email [email protected] You can also visit www.newlifecharity.co.uk/greatermanchester which highlights the support the charity gives families in the county through its Newlife Greater Manchester Fund.
Pictured: Jason Thornton