The mum of a 16-year-old with cerebral palsy who spent years learning to walk, is hoping to raise money for an operation that will allow him to stay on two feet and pain free.
Kieran Evans, of Pinchbeck, was initially given just 12 hours to live after being born three-and-a-half months early.
The resulting bleeding on his brain led to cerebral palsy and it took years of physiotherapy, three leg operations and botox injections to get him on two feet.
Further operations to allow him to walk included a procedure where the bones in his legs were broken and pinned back together.
But Kieran suffered a huge setback a few weeks ago when he suddenly experienced painful cramps and spasms that limit his mobility again along with a fall – leading to him having to return to a wheelchair.
He and mum Melissa were devastated to learn from a specialist that within five years, the cerebral palsy will mean Kieran will lose all mobility from the waist down.
There is hope though.
In August a new treatment, which involves the cutting of the nerves affected by cerebral palsy in the spinal cord became available. It could mean pain-free mobility and no spasms or cramps.
Up until August, those wanting to have the operation needed to spend £50,000 travelling to America, but it’s now available at the Queen’s Medical Centre in Nottingham, one of just five nationally offering the procedure.
It is available free for under-10s on the NHS, but Melissa has launched an appeal to raise the £13,000 the family needs for Kieran to have the surgery.
She said of being told of his worsening condition: “It’s 16 years of him learning how to try to crawl, climb, stand and walk in his own way just gone!
“To say we are both devastated is an understatement.
“I dreamt of him living a ‘normal life’ and because he had made such progress I believed it to be possible.
“At no point did anyone ever say Kieran could end up this way.”
Both Melissa and Kieran, who is also deaf and attends a specialist school in Derby, are now hoping to go through with the operation if they can raise the £13,000.
“The doctors have told us that so far the operation has always been a success,” Melissa said.
“He would also be free of pain straight away and he wouldn’t have to take any more medication.
“That would be fantastic as he’s taking so much medication now there’s always long and short term side effects, including hallucinations.
“Kieran wants to do all the things a 16-year-old boy wants to do and he wants to do them on his own.
“He’s a very normal person who has learned to tackle his disability and become more confident, sensible, mature and eager to grow up.
“He wants to be a dad and he wants a job but he’s been worried recently about how he will be able to do both of those things without being able to use his legs.
“Kieran is one of the strongest people I’ve ever come across. He’s so determined and so positive.
“Even before he had left the hospital he had sepsis three times in the neonatal ward and we were told on several occasions that he wouldn’t live for hours or months or years, but he took it all on and came through. He’s still proving everyone wrong.
“Kieran’s a miracle and I’m so proud of him.
“Despite all of what’s happened to him he’s never given up and as his mum I want to give him he best opportunity at life which he deserves.”
The appeal has already had a big boost with £2,275 raised so far.
The total includes a donation of £2,000 from Welland Power whose managing director Charlie Farrow, said:
“Everyone at Welland Power are pleased to donate this year’s charity fund to help Kieran on his way to this operation. We hope everyone who is able can support Kieran to reach his target.”
Donations can be made online at https://www.gofundme.com/kieran039s-new-legs
