My son will never walk or talk and may die young
MUM’S HEARTBREAK FOR MYLES WHO WAS BORN WITH RARE INCURABLE DISEASE
A MOTHER whose baby will never be able to walk or talk has spoken of her devastation.
Myles Tucker was born with 4H leukodystrophy, an incurable disease which only affects 120 children worldwide.
The life-threatening condition is mostly found in babies, with many tragically dying by their late teens. The extremely rare disorder means the three-year-old has severe hearing loss, is unable to speak, has trouble walking and only has seven teeth. His mum, Georgia Hughes, says the tot will eventually lose all of his mobility.
“It’s absolutely heartbreaking,” the 24-year-old said.
“He will have a shortened lifespan.
“When we had the genetic result, the first thing the paediatrician said to me was that he’s going to lose all movement.
“It was very hard to take in because yes, he can’t walk or stand, but he’s very active and can crawl to get to places.
“You just don’t see things like that in the future. It’s very scary.”
Leukodystrophy describes a group of more than 50 inherited neurological disorders. These diseases affect myelin, the protective covering on nerve cells
in the brain and spine.
It causes a progressive loss of neurological function in infants, children and sometimes adults. They affect about one in 7,000 births.
After failing his hearing test, doctors carried out a full-body examination on Myles, whose dad Alyn is from Droylsden, and noticed a click in his left hip. By seven-weeks-old, he was in a hip harness and had hearing aids.
By the time Myles was 18-monthsold, he still wasn’t crawling properly and was diagnosed with severe global development – but doctors couldn’t figure out why he was deaf. Following an MRI scan and genetic testing, he was finally diagnosed with 4H leukodystrophy. Tragically, as well as losing his hearing, doctors predict little Myles will also eventually lose his sight. “He’s still not walking or standing and he’s nearly four,” Georgia, from Holywell, Wales, continued. “Instead of having 20-plus teeth, he has seven. He can’t chew properly and he will lose the ability to swallow. He can’t talk – he communicates by sticking his tongue out and looking at things.”
Georgia has set up a fundraising page with the hopes of finding a cure for this illness at justgiving.com/fundraising/ georgia-hughes4.
You just don’t see things like that in the future, it’s very scary Georgia Hughes