Community rally round for terminally ill youngster Mabel and her family who are helping to find a cure for Batten Disease

This summer, little Mabel Gregson was diagnosed with a very rare neurodegenerative disorder called Batten Disease, which causes seizures, blindness, speech delays, and eventually childhood dementia.

Four-year-old Mabel has been going for regular sessions at St Mary’s Hospital, in Manchester, where she’s having a breakthrough enzyme treatment which will hopefully slow down the regression – but there is currently no known cure for the extremely life-limiting condition.

Cheryl Parry, mother, said: “She’s on her seventh treatment and we are hopeful and positive. It’s going well but we’ve seen a decline as she’s lost most of her speech now. I dread to think how she’d be without [the medication].”

Cheryl and her husband-to-be, Chris Gregson, said they are ‘clinging on to’ the comfort that Mabel will help find a cure for Batten Disease – which also means raising funds for research.

Mabel is one of an estimated 25 – 40 children living with the condition in England.

She’d been relatively healthy until she started getting seizures in January 2023. After months of tests, the family received the devastating diagnosis, in June 2023.

Since then, they have been supported by the Batten Disease Family Association – a charity that supports families and professionals who work with them, while also increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures.

Cheryl said: “We desperately wanted to give something back and my wonderful brother Chris Norrish has organised a Charity Football match to rival the Premier League. We will raise as much money as we can for the charity to help a little way to find a cure for this incomparable and cruel disease."

Squires Gate FC are hosting a charity football match and fundraising event for the BDFA on Friday 29th September, from 7pm. There will also be some top raffle prizes – including 2x tickets to see Taylor Swift, a Versace overnight bag, and a round of golf at Staining Lodge Golf Course.