Volunteer traders give Rotherham girl with Batten disease £100k home renovation

• Video report by Jonathan Brown.

Volunteer tradesmen have carried out a £100,000 home renovation to help a blind girl with an incurable disease live more comfortably.

Fourteen-year-old Stevie Taylor, from Rotherham, was diagnosed with Batten disease at the age of eight, after teachers noticed she was struggling to see in class.

The degenerative condition can lead to seizures, blindness and childhood dementia.

Stevie's father, Paul, started trying to create a home able to meet his daughter's long-term needs two years ago, but costs quickly spiralled.

After hearing their story, the community rallied around to make the property in Wath upon Dearne more safe and accessible.

Mr Taylor told ITV News: "I can't thank everyone enough. I've lived here all my life and it's a place where people look out for each other.

"All these things have been achieved because of what people have done for us. You can't put that into words. You can't measure it."

Around 40 tradespeople inspired by Stevie's story stepped in, donating time and materials which Paul believes has saved the family at least £100,000.

Mr Taylor said: "I always worried at night if I heard her get up for the toilet that she was going to turn the wrong way and fall down the stairs.

"To have her bed and bathroom on the same level and somewhere we can sleep, so we can hear her in the night, has been a major thing. It's helped us all relax a bit more."

Stevie, who has been described as "bright" and "bubbly" by her father, also thanked the community for creating her dream bedroom.

She added: "It’s nice to know people want to help us and put time and effort into making the house look nice."

What is Batten disease?

Batten disease is a group of incurable genetic disorders. There are 13 known types.

Passed down through families, it results from a genetic mutation.

The disorder affects cells’ ability to break down and get rid of cellular waste, causing problems with the nervous system.

Symptoms, which can appear in childhood and early adulthood, include seizures, vision loss and cognitive problems.

How common is Batten disease?

Healthcare providers estimate that Batten disease affects about one in every 25,000 babies.

Siblings of children with Batten disease have a 25% chance of having the disorder.

Currently, there is only a treatment available for one form of Batten disease and there is no cure.

Liz Brownnutt, chief executive of Batten Disease Family Association, said: "We ned to raise more awareness both with the general public as well as the medical profession because we need more treatments.

"We really need a quicker path to diagnosis so that more patients can get earlier access to treatments and ultimately help them found a cure."

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