• Wed. Nov 27th, 2024

Spotted UK

Local News Reports

Schoolboy with terminal condition desperate to enjoy ‘freedom’

BySpotted UK

Feb 20, 2023

A "funny, bubbly" teenager with a life-limiting condition which causes his muscles to dissolve over time could enjoy biking through the woods with his family for the very first time.

Junior Willoughby, from Skelmersdale, was born with Spinal Muscular Atrophy, a genetic disease which causes the muscles to break down and the spine to slowly collapse. Because of his condition and a lack of accessibility, the 14-year-old finds it difficult to leave the house, and has never played football or ridden a bike like other boys his age.

His sister Hannah, 23, now hopes to bring "a lot more freedom" to his life, as she raises money to buy him a specially-made bicycle so he can experience the joy of cycling with his family.

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She said: "Junior's constantly in his wheelchair or in bed. He loves playing the X-Box, but he can only play with his hands resting on his legs because he can't actually lift his arms up, or use his arms. He's very limited as to what he can do. He can't move a lot. He's started to struggle to hold his head up, so we have to put pillows at the side of his head. He can't feed himself. He can't do basic, everyday things.

"With his condition, he's constantly getting worse. When he was younger he could move his arms and feed himself, but as he gets older everything deteriorates. He's already started to struggle to breathe at night time, so he has to have oxygen every night. That will keep getting worse, until the inevitable happens.

"He'll have his days when he'll say I wish I could walk, I wish I could do this. But there's nothing we can do. We can't fix it. We were always told from the beginning that his life expectancy was about 16 years. But you can't say that's going to be the case – he could live longer. He could live into adulthood."

Junior, who attends the Dean Trust school in Wigan, is currently awaiting an operation to straighten his spine at Alder Hey Children's Hospital. If successful, it means he will be able to sit up properly – but there is a risk he may end up paralysed due to the procedure.

Hannah hopes that finally being able to ride a bike will give him a stronger sense of independence as his physical condition inevitably deteriorates, and has set up a fundraiser for the item.

She said: "The bike is around £4,500, but Junior's bike will have to be measured to him, so it will cost a lot more. It's a normal bicycle in that we can sit on the back and ride it, but at the front is a wheelchair seat, which would mean Junior could go on a bike ride with us.

"It's something he's never done, never had the chance to do before. To get him this bike would mean the absolute world to him and give him a more normal teenage life.

"Junior is a funny, bubbly, big personality. He's always the centre of attention. He's just the most beautiful boy ever. He loves the girls, he loves trying to flirt! He's just secluded from normal everyday life right now, and if he's able to get out and about he'll be able to feel a lot more than what he's feeling now."

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