Sheffield teenager Ben Lewis is determined to make the most of everyday as he has a degenerative condition which means he may only have another ten years to live. After losing the use of his legs five years ago, his upper body strength is now fading and he will soon be unable to use the powered wheelchair he relies on – but the replacement he needs will cost more than £21,000.
Having Duchenne Muscular Dystrophy will eventually affect all of sixteen-year-old Ben’s muscles. Unable to walk since the age of 12, he uses a powered wheelchair for mobility, but he is now also losing his upper body strength which means he is unable to hold a cup and needs help cutting food. This lack of body strength means he is unable to transfer himself out of the chair, so any manoeuvre out of the chair requires the use of hoist and sling. He also needs much more postural support to be comfortable.
The powered wheelchair that will give Ben all the support he needs so he can comfortably spend up to 16 hours a day in it, would also help him to fulfil the plans he is making – including studying for A-levels and going to university, trips with family and generally being as independent as possible. As the cost of the chair is £21,238 the Lewis family turned to Newlife Foundation for Disabled Children, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Now the charity is looking for ‘local heroes’ to come forward to help meet the cost of the chair, to which the family have already pledged £1,500.
Ben, who lives with parents Hannah and Michael and 13-year-old sister Daisy, is a huge Sheffield United fan who goes to as many matches as possible, both home and away, loves trying fine food and is determined to see as much of life as possible.
“He is quiet, but has a ‘got to do it’ attitude and he just wants to go out and try things, said mum Hannah. “We’ve tried to make his life as it would have been without the Duchenne Muscular Dystrophy.”
“The wheelchair the NHS offered Ben when he was 12 didn’t have enough battery power for him to even travel to school and back with his friends, so we managed to fundraise the money to buy him the powered chair he has now, but it no longer supports his posture and being in it all day means he is so uncomfortable.
“The chair he needs now would support his posture and has different moving parts, so it would allow him to change position when he needs to. He could lie down which would prevent pressure sores developing and the seat also rises so people wouldn’t always be looking down on him, he could look people in the eye when he speaks to them and see what other people are seeing. It would give him the independence to move himself without being helped.”
The powered chair would have much more manoeuvrability and would mean he was as comfortable as possible, while giving him the freedom to go places and do things for himself.
Hannah added: “We just want Ben to have the best experiences he can while he’s with us.”
If you would like to help Ben, visit www.newlifecharity.co.uk/southyorkshire read his story and click the ‘Donate Now’ button. Newlife guarantees that 100 per cent of the money donated to help Ben will be used to fund the powered wheelchair. Any surplus funding will help provide equipment for other disabled children in the county as Ben is one of 19 families in South Yorkshire with equipment needs of £47,571 currently working with the charity.
For further information about how you can fundraise to support families in South Yorkshire, contact Newlife’s Regional Fundraising and Awareness Manager for Yorkshire, Caroline Artschan, on 07534 491 933 or by emailing firstname.lastname@example.org.
For full details of Newlife Foundation’s range of practical support for disabled and terminally ill children and their families, call the Newlife Nurse Helpline – 0800 902 0095 (free from UK landlines and mobiles) – or go to: https://newlifecharity.co.uk.
Pictured (L to R): Mum Hannah and Ben Lewis