Landmarks to turn orange in honour of four-year-old South Shields boy with fatal health condition

South Shields Town Hall and Gateshead’s Millenium Bridge will glow orange on Tuesday, June 9 in support of a little boy suffering from a rare condition.

Tuesday, 9th June 2020, 7:00 am
Updated Tuesday, 9th June 2020, 3:24 pm
South Shields Town Hall will be lit up orange to shine a light on James Young and his rare condition.

Four-year-old James Young, of Whiteleas, was diagnosed with Batten Disease in January - a rare condition of the nervous system, for which there is currently no cure.

His parents, Diana and Dean Young, first realised something was wrong when James was two and began having problems with his speech, before developing behavioural issues and struggling with balance and coordination.

James was on the waiting list to be tested for autism when he had his first seizure – while Diana and Dean were on their honeymoon.

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Dean and Diana Young on their wedding day with James and sister Gracie, 10,

He then began experiencing up to 50 seizures a day, but despite doctors diagnosing him with epilepsy, the couple knew something else was wrong.

In November 2019, after months of fighting James was admitted to the RVI in Newcastle and two months later received the devastating diagnosis.

“It felt like our world just fell apart that day,” said Diana, 29, who gave up her job in Debenhams to become James’ full-time carer.

“Everything that we had planned for just changed instantly.

James Young was diagnosed with Batten Disease in January.

“We knew what they were testing him for but we hadn’t even heard of it.

“It’s really rare, we think he’s the only child in South Shields to have it.”

Batten Disease will affect James’ memory and his ability to walk and talk.

The couple were told that without treatment, he would be unlikely to make it to his 13th birthday.

James travels to London’s Great Ormond Street Hospital for enzyme replacement therapy every two weeks.

Dean, 33, a former bathroom and kitchen fitter, has also given up his job and travels with James to London’s Great Ormond Street Hospital every two weeks for enzyme replacement therapy to manage his symptoms.

“The treatment does make a huge difference,” said Diana.

“There was a point where it felt like he wasn’t there anymore, his whole body was just floppy and that was a really low point for us.”

Now James is back on his feet and able to use a walker to get around.

South Shields Town Hall.

A Go Fund Me page has been set up to support the family and allow them to make memories together while they can.

Diana added: “We don’t know how long he’s going to be here. The treatment prolongs life but every child is different.

“We’re still learning about the condition but we want to try and raise as much awareness as we can.”

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On Tuesday, June 9 - International Batten Disease Awareness Day - South Shields Town Hall and the Gateshead Millenium Bridge will both be lit up orange in honour of James.

The Mayor of South Tyneside, Councillor Norman Dick, said: “This family’s story is absolutely heart-breaking. I am sure there will be many people who had not even heard of this disease but it really brings it home when it affects one of our own young residents.

“It is only right that we support this family in raising awareness of this terrible disease by lighting up our beautiful Town Hall on National Batten’s Awareness Day.”

Donate to James’ Go Fund Me page

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