Rotherham girl, 13, with Batten disease features on charity Christmas single

A schoolgirl with an incurable disease which has already taken her sight has featured on a charity Christmas single to raise awareness for her condition.

Stevie Taylor was diagnosed with Batten disease at the age of eight, after teachers noticed she was struggling to see in class.

The 13-year-old, from Rotherham, is among fewer than 200 children and young people in the UK with a form of the disease.

The degenerative condition can lead to seizures, blindness, loss of hearing, mobility problems and memory loss that worsen over time.

Stevie Taylor and family. Credit: Family handout

But Stevie's dad Paul said she had stayed positive and inspires the family to do the same.

He told ITV News: "When you’re having a bad day, you just have to look at her and she’s smiling, she’s happy.

"You’re thinking about the bad things that are going to happen and what the future is going to hold, but when you see her and she’s smiling and happy you know that she’s fine so you have to just put that to the back of your mind."

Although Stevie has now lost her sight and must walk with the support of a cane, she is still fulfilling her lifelong dream of learning to ride a horse, with the help of Barnsley Riding for the Disabled.

Paul said: "Obviously time is limited so we're just trying to cram as much in as we can.

"It’s just nice to see her doing something she loves and just to see her smile and doing something independently without us leading her and guiding her. I can tell she’s really happy and she loves it."

Stevie is learning to ride a horse with the help of Barnsley Riding for the Disabled.

Alongside school and horse riding, Stevie has also been singing as part of the Batten Community Children's Choir.

The choir, which is made up of children who are affected by the disease and their siblings, has now featured on a Christmas single called This One's For The Children.

The single, which can be downloaded here, was created by Beyond Records owner David McGovern and all profits are going to the Batten Disease Family Association (BDFA) which supports families affected by the condition.

Elizabeth Brownnutt, head of fundraising for the BDFA, told ITV News: "Depending on where you live and whether medics have come across Batten disease before, it can be a bit of a postcode lottery and the diagnostic journey can be a long one."

She said that there is currently a treatment for one type of Batten disease, but it's not a cure and there are 12 other types of the disease without any available treatment.

The charity hopes that by raising awareness and money, further treatments can be found and hopefully even a cure.

Elizabeth added: "We couldn't be more proud of these children - they are raising awareness for Batten disease themselves which is so unique and it's bringing them joy, and it's also bringing hope to their families."

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