Shining a Light on Rare Disease in Support of Local Family

Posted by: Press team on 10 June 2020 14:40

South Shields Town Hall was bathed in an orange light last night in support of a little boy who is believed to be the only child in the town to suffer from a rare disease.

Four-year-old James Young has Batten Disease, a fatal condition which affects the nervous system.

As a result of the disease James will lose his ability to walk and talk and his memory will be affected. He is not expected to live beyond the age of 12.

His mam, Diana, 29, of Whiteleas, said: "We feel it is important to spread the word about this condition and have had amazing support from charities in our home town.

"We are so pleased that the Town Hall was lit up as shining a light on this condition helps raise awareness of this horrible disease."

Diana and her husband, Dean, a former kitchen and bedroom fitter, both had to give up their jobs to care for James when he became seriously ill and began having seizures.

The Mayor of South Tyneside, Councillor Norman Dick, said: "This family's story has really touched my heart and that of the Mayoress.

"When James's family asked us to light up the Town Hall we were only too happy to agree. It was a simple but effective way of raising awareness of this dreadful disease on National Batten Awareness Day."

Although there is currently no cure for Batten disease, James travels every two weeks to London's Great Ormond Street Hospital for enzyme replacement therapy which manages his symptoms and gives him a better quality of life.

James has a GoFundMe page. Anyone who would like to donate is asked to visit

Last modified: 08 October 2021 14:43