Campaign launched for three-year-old with rare spinal condition - who might never be able to walk - but still manages to 'smile every day'
Three-year-old Rayne Webster was diagnosed with spinal muscular atrophy type 2, shortly after his second birthday.
His mum Kymberleigh Etherington, 19, had a perfectly normal pregnancy but she and dad Dylan Webster, 21, started to notice something was wrong when their son was around nine months old.
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Hide AdAt 12 months little Rayne still wasn’t showing any signs of crawling.
Six months later he was finally referred to a pediatrician who immediately spotted something was seriously wrong.
He is now undergoing hospital treatment and it is hoped that medics will be able to slow down the progression of the condition.
In the meantime his family have launched a fundraising campaign in a bid to get him a self-propelling wheelchair to improve his ability to get around independently.
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Hide AdThe rare nerve condition, which affects the voluntary muscles and develops in babies aged six to 12 months, means Rayne is unlikely to be able to walk and could develop feeding and breathing problems as he gets older.
Kym, of Lord Nelson St, Tyne Dock, who had Rayne when she was 15, told the Gazette: “They said it’s very unlikely that he’ll ever walk and he’ll probably never crawl. I felt almost numb.”
The couple said they blamed themselves at first as the condition is genetic, but there is no way of detecting the gene until the baby is born and starts to show symptoms.
“We felt guilty, because technically we gave him it,” she continued.
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Hide Ad“We still haven’t fully come to terms with the fact that he might never walk. We went through a grieving process for the child we thought we were going to have.”
But Kym added: “We love him even more because of his condition. It’s made us a lot stronger.”
Rayne, who also suffers from severe scoliosis, is now undergoing treatment at the RVI in Newcastle, which the couple hope will slow down the progression of his illness.
They don’t know yet if Rayne will be able to attend school due to the risk of colds and sickness bugs which could be life-threatening to him.
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Hide Ad“Luckily he still manages to smile every day regardless of everything,” said Kym.
“He’s determined to move, he’s very independent and won’t let you feed him - it will be heartbreaking when he’s no longer able to do that.”
The couple are now fundraising to buy Rayne his own self-propelling wheelchair to help him get around the house.
He currently has the use of a borrowed chair from a family friend, but will soon need a bigger one which could cost up to £3,000.
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Hide Ad“The truth about disability equipment is it’s not cheap,” she said.
“It would allow him to move around and do the things toddlers want to do.”
Anyone withing to donate towards the cause can find the fundraising page at the link here.