Burnley boy (5) battles rare brain condition - charity collection

Kyle Fay (5), Jessica Fay (3), Laura Bell, Jayden Fay (1) and Denver Fay (5). A220310/1d
Kyle Fay (5), Jessica Fay (3), Laura Bell, Jayden Fay (1) and Denver Fay (5). A220310/1d

A BRAVE Burnley boy is helping to raise funds for a charity close to his family’s heart.

Five-year-old Denver Fay suffers from hydrocephalus and chiari malformation, a rare brain condition which has seen the courageous little battler undergo 12 operations in the past 18 months.

The Association of Spina Bifida and Hydrocephalus gave the family invaluable advice during Denver’s diagnosis and his mum Laura Bell said they wanted to help repay their kindness by holding a collection today.

“They were absolutely amazing when Denver was diagnosed,” said mum-of-four Laura, who lives in Waddington Avenue, Burnley. “Me and Denver along with family and friends are going to be out in Burnley town centre with buckets trying to raise as much as we can.

“One of our friends, Kev Foley, has recently completed a half-marathon to raise funds and we’re going to be holding more events in the future. At the end we are going to put all the money together and present it to them.”

Denver’s condition, which causes fluid on the brain, means he has had to have a shunt inserted into his brain which helps drain the fluid into his stomach where the body naturally absorbs it.

Despite his suffering Denver, a pupil at St John the Baptist RC Primary School, always has a big smile on his face, said his proud mum.

“He does get very poorly. Some days he can’t even walk or talk. He gets a lot of bad headaches and gets tired really easily as well.

“A lot of the operations have been to replace or fix the shunt. It’s meant to last his entire life but he hasn’t really had any luck with it. He’s been so brave through it all though and just keeps on smiling.”

Another factor which has not helped has been the closure of Burnley’s children ward.

Laura, along with many in the town, campaigned tirelessly to save the ward but were left angered by its relocation to Blackburn just before Christmas.

“The doctors knew everything about him there”, said Laura. “When I go to Blackburn now it’s like starting again every time. He was poorly over Christmas but I wasn’t able to get him over there because of the snow. So it meant I was here at home with a poorly boy on my hands for a week when really he should have been in hospital. It’s not right.”

Laura is certainly no stranger to fund-raising having raised money and awareness for Meningitis UK when her only daughter Jessica, now aged three, contracted the disease at 16 weeks old.

“She’s perfectly fine now,” said Laura. “She’s a little behind on her learning but apart from that she’s perfect.”

Speaking about tomorrow’s collection, Laura added: “We just hope as many people as possible donate as much as they can to help a very worthy cause.”

Anybody wanting to help can find them in Burnley town centre between 11 a.m. and 4 p.m.. Alternatively you can visit www.justgiving.com/laura-bell1.

More information on ASBAH can be found at www.asbah.org.