The rare condition, for which there is currently no cure, can affect memory, as well as the ability to walk and talk, with his parents told he may not reach his 13th birthday.
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Now council chiefs have raised his plight again, as his family and the whole community hope for a breakthrough.
Speaking at a meeting of South Tyneside Council’s cabinet, leader Iain Malcolm called for greater awareness of the disease in the hope it could speed the search for a cure.
He said: “We [lit South Shields Town Hall orange] to raise awareness of International Batten Disease Awareness Day in support of four-year-old James Young, of Whiteleas.
“There is currently no cure for this awful disease of the nervous system, which will affect James’s memory and his ability to walk and talk in the future, if no cure is found.”
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.
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.”