Doctors said our son had paranoid schizophrenia... it was actually a rare life-limiting disease

A Bury man had his symptoms mistaken for paranoid schizophrenia for years until he was eventually diagnosed with an extremely rare life-limiting disease.

Robert Turner was born with Juvenile Batten Disease, a condition which causes mental impairment, worsening seizures and progressive loss of sight and motor skills. The disease is fatal and progressively worsens over weeks, months or years.

His parents, Pam and Gary, say the neurodegenerative disorder did not begin to show signs until Robert was seven-years-old. He first lost his sight before he began suffering seizures as a teenager.

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By the time he was 18, when Robert was registered blind, his legs began to bend at the knees. Walking became difficult and no amount of physiotherapy training could help him stand upright.

It wasn’t until some years later that his family finally received the news they had been waiting for. Robert was staying in a mental health facility with suspected paranoid schizophrenia when he was diagnosed with Juvenile Batten Disease aged 24.

“He shouldn’t have been in a mental health facility,” Pam told the Manchester Evening News. “In our guts, we knew it wasn’t right but we’re not trained. They wanted to diagnose paranoid schizophrenia but we knew that wasn’t it. We said the consultants were wrong.

“He had two tests; it was going to be between two diagnoses. Both of them weren’t brilliant but the Batten’s one was the worst. To be fair, we knew in our hearts by then what was going to come.

“We got him out of the mental health facility and onto a medical ward with carers. Then we looked for a home for him and that’s when we heard about the SeeAbility home.”

Juvenile