A LITTLE boy with a rare condition has set up a sponsored walk to ‘give back’ to the children’s hospital that has helped with his care.
Alfie Ledgeway, of West Street, Wombwell, was diagnosed with Arnold chiari malformation and sleep apnoea when he was two years old.
The condition means the lower part of his brain is pushed towards his spinal cord, below the entrance to the skull, causing him severe and constant headaches, difficulties with his eyesight and balance problems.
The seven-year-old has now had more than 30 operations, including major brain surgery, and last year had a major spinal operation that risked him being paralysed.
He is still at risk from paralysis as he has a shunt in his spine which is attached to his nerves that can’t be removed.
He had most of it removed in an operation in October last year.
And with facing many hospital stays the other month, Alfie and his family want to give back to ward 5 at Sheffield’s Children Hospital who have looked after him during his five years of treatment. The walk will take place on June 29 this year, and the Barnsley Chronicle is backing it - and urging readers to get involved.
Mum Hannah, 22, said: “Alfie really wanted to do something as the hospital and ward are doing a fun day later this year to raise funds as they have run out of money to expand.
“We’ll take part with the fun day but Alfie wanted to raise money so the nurses were asking what he wanted to do.
“One of Alfie’s ideas was a sponsored walk. Originally we wanted to walk from Wombwell to the Children’s Hospital but he can’t walk far so that would be very difficult as that’s about 14 miles.
“We’re probably going to walk from the Wombwell Cricket Club to Oakwell.
“He wants as many people as possible to come and walk with us and to wear green as that is his favourite colour.
“He was telling us to ring Gordon Ramsay because he knows him and also Jeremy Kyle and, of course, Alfie Mawson.”
Alfie has picked up a few celebrity friends over the years, including former Barnsley FC turned Fulham player Alfie Mawson, who his family say he still has a strong bond with.
He also gave talk show host Jeremy Kyle a good talking to when he appeared on the show in 2017.
Alfie has appeared in the Chronicle many times over the years and won the Special Achievement Award at the inaugural Young Champions Awards last year.
Many people have praised Alfie for his upbeat attitude as well as his family, as they say they take life day by day and spend as much time with Alfie as possible.
Even though Alfie was diagnosed with Arnold chiari malformation when he was two and a half, his family had known something wasn’t quite right when he couldn’t sit up at six months.
His crawling and walking were also delayed. But by the time he was diagnosed, the damage to his spine was irreversible.
In addition to his chiari malformation, Alfie also suffers from severe sleep apnoea and periodic breathing.
He sleeps with oxygen and ten members of his family have been trained in resuscitation in case he ‘forgets to breathe’.
Problems with an ecoli urine infection also mean one of his kidneys operates at only 18 per cent.
He has set exercises he does every day to help strengthen his back, which he mainly does at school.
His nanan Hayley Ledgeway, 43, said: “His diagnosis came about so fast at first that it was scary.
“He was in Barnsley Hospital with an ecoli urine infection and while he was in the doctor came in and said that it wasn’t good news and that he had fluid on his brain and they rushed us to Sheffield Children’s and he was in in two days.
“It was an eight and a half hour long operation.
“He has his good days and his bad days, we know as soon as he wakes up if he will have a good or bad day.
“Sometimes it can be awful for him. You can never plan ahead, you have to take every day as it comes. He is such a complex case that even certain doctors don’t know how to treat him.”
The family want as many people as possible to get involved in the walk.
For more information and more details, search Walk with Little Alfie on Facebook.
