Stevenage mum’s appeal to help adult disabled son retain last shred of independence
PUBLISHED: 11:00 16 May 2020
A devoted mum who cares for her severely disabled adult son is appealing for help in retaining his last shred of independence.
Kelli Smith, who lives in Stevenage, is desperate to stop the one thing her son Weslie can do for himself being taken away.
Weslie, now 21, was diagnosed with Duchenne muscular dystrophy - a muscle wasting, life-limiting genetic disease - when he was four years old and now also has severe cardiomyopathy - a disease of the heart muscle that makes it harder to pump blood to the rest of the body and can lead to heart failure.
Kelli explained: “Until recently the life expectancy of a child diagnosed with Duchenne muscular dystrophy was limited to teenage years. Thanks to advances in medical science and complex medication regimes, this expectancy has been delayed, although there is no concrete evidence as to how long for.
“Wes needs help with everything, from getting up in the morning, washing, dressing and feeding, to being put to bed. That is the reality of Duchenne muscular dystrophy. Imagine losing the ability to do all these things for yourself.
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“Wes is a full-time powered wheelchair user and driving it is the one thing he can do independently, but lately even this task is becoming more difficult.
“He needs a specialised joystick to be able to continue to operate his wheelchair, which is not funded by the NHS. Their solution is to adapt his wheelchair and move the controller to the back so we, or a carer, can drive him around. That will take away the last of his independence.
“A specialised joystick will help prolong Weslie’s ability to control his wheelchair independently.”
Kelli is desperate to raise the £1,495 needed to buy the new joystick, and further funds to have it fitted to Weslie’s wheelchair.
Due to the costs involved in travelling abroad with a severe disability, Weslie has not had a holiday abroad with his family for 10 years, so Kelli said any money left over would be put towards making that dream a reality.
“It would be a bonus if we could achieve this also, although this isn’t the main priority,” she said. “Any donations will be greatly appreciated and make Wes independent for longer.”
To donate, visit gofundme.com/f/improving-the-quality-of-life-for-dmd-sufferer
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