A Spalding family who are travelling to America every three-months for life enhancing treatment for their five-year-old are looking to raise awareness of the condition he suffers with.
Swaley Webb was diagnosed with Duchenne Muscular Dystrophy, a debilitating disease which means a genetic condition which means his muscles are weakening as he gets older.
His mum and dad Ben and Martina first noticed something was wrong when he was getting slower to get up and as they watched his movements seem to get worse.
After his diagnosis they spoke to others with the condition including a family in Ireland who told them about the stem cell treatment only available in America that could provide a temporary boost.
Ben says the first such treatment earlier this year had a positive effect on Swaley, but it means going back to Philadelphia every three months with them due to embark on the next four day-trip tomorrow (Friday) for the half hour operation which costs nearly £4,000.
“Some people might not like what we’re doing, but we’re just trying to help our son have the best life possible,” said Ben who works as self-employed landscape gardener. “We’re trying to do everything we can to help him.
“I know it is working and I can already see the improvements after his first course.
“When he was three we noticed he was always on his tip toes and didn’t seem to be strong enough to do things we thought he would be.
“He particularly struggled to stand back up which is when we took him doctors thinking he’d some kind of problem with his balance.
“It was a bit of a shock to be told it was muscular dystrophy which I’d never heard of before.”
Ben is looking to fund the trips himself and is also grateful for the support from his friends and relatives.
“We know of one family who have a lovely boy in a worse condition than Swaley and his family posted a video of him running up the steps in Philadelphia even quicker than Rocky did in the film,” he continued.
“We’ve also spoken with a number of people in this country with the condition.
“Even if it doesn’t work any further, at least we can say we tried it for him.”
Ben says Cowbit St Mary’s Primary School pupil Swaley is a lively child who loves dinosaurs and horses in particular.
“In himself he’s perfectly OK.
“He does everything other children do and he’s quite a loud and noisy. He’s just a bit slower.”
Ben has created a Go Fund Me Page and is looking to do the 15k Tough Mudder obstacle course in London in May alongside brother-in-law Billy Elliott to help raise funds towards research.
The page states: “If we all get together and raise some money so they can find a cure for this it would be brilliant.
“You haven’t got to give a lot, every little helps.”
For the Go Fund Me search Duchenne Muscular Dystrophy on Go Fund Me.
