THE community has rallied around a Barnsley family to raise almost £10,000 for a youngster diagnosed with a terminal disease which robs her of her senses.
Stevie Taylor, 12, from Wath, was diagnosed with CLN3 Batten disease when she was just eight years old.
Often described as juvenile Batten disease, the illness is an extremely rare and incurable neurodegenerative condition that causes profound disability in children - a devastating and life-changing diagnosis.
Stevie’s dad, 45-year-old Paul, said they originally thought the youngster would just lose her sight - something they’d take now knowing the full extent of her illness.
He told the Chronicle: “Stevie was diagnosed in 2018 and up until then she’d just lived a happy and normal life.
“We noticed Stevie was struggling to see and after a few eye tests they noticed that something wasn’t quite right.
“After more blood tests Stevie was diagnosed with Batten disease.
“Initially we thought that she would just lose her eyesight - we’d have taken that because of what we know now.
“It was just a massive shock - our world crashed and it was so devastating.”
The disease robs children of their senses, causing them to lose their sight, ability to walk, talk and swallow - as well as developing childhood dementia.
As there is no cure, death is unfortunately inevitable and occurs anywhere between late teens to early twenties, although some youngsters can live into their thirties.
Paul and his wife Karen decided to sell their three-storey home and move into a bungalow in a bid to make Stevie as comfortable as possible - though it needs to be totally renovated to suit her needs.
They plan on raising enough money to fund the cost of level access flooring, an accessible kitchen, a sensory room and further adaptations.
“We kept it to ourselves when she was diagnosed because it is such a horrendous disease,” Paul added.
“As the disease progressed we realised that we would need some help.
“We lived in a three-storey property and Stevie’s room was in the loft bedroom.
“With the condition potentially leading to her being in a wheelchair we decided we needed to move.
“We want to make it as comfortable as possible for her as it’s going to be her family home forever.”
The community has rallied together for Stevie and her family in recent weeks with more than £9,000 already raised of their £25,000 target.
To help raise the money, Paul and a number of his friends will take part in the Yorkshire Three Peaks challenge on July 16.
“The support has been massive,” he said.
“A few local people knew about it and so we knew there would be some support but we didn’t expect to get as much help as we have.
“It’s not just about the money - people have been coming to us saying they’ll help with materials and it’s been amazing.
“We just want to make as many happy memories with her as we can.”
The funds that are raised will go towards the family’s adaptations as well as a donation to the Batten Disease Family Association (BDFA) charity to help other families who are living with the same condition.