A seven-year-old boy has died from a rare condition that is thought to affect fewer than 150 children and young people in the whole of Britain.
Dylan Sinclair, who died at Lynn’s Queen Elizabeth Hospital on Saturday, had a form of Batten disease, a degenerative condition for which there is no cure.
His aunt and uncle, Jade and Lee Robinson, have now spoken in a bid both to raise awareness of the illness and funds towards research.
Jade said: “It’s a condition that nobody has heard about. For any child that is diagnosed with it, it’s fatal.”
And they have paid tribute to the medics and charities, particularly the staff on the Rudham ward at Lynn’s Queen Elizabeth Hospital, for the support given to Dylan and his family during his illness.
Jade said: “They have been amazing. They have known Dylan from very early on and he always had a room basically reserved for him.”
While Dylan initially appeared to be a happy, healthy child, the first sign anything was wrong came when he had a severe seizure at the age of three.
Initially, doctors believed that he might have had epilepsy, while his interest in visual stimulation, particularly windmills, also led medics to think he may have had autism.
But it was only after he suffered two more severe seizures, the last when he was five, that he was diagnosed with Batten disease.
The condition, which is thought to affect fewer than 150 children and young people in the UK, is caused by abnormal genes which cannot produce the proteins needed to ensure that cells can function properly.
Symptoms can include severe seizures, loss of vision, decline of speech, language and swallowing skills and loss of mobility.
As Dylan’s condition deteriorated, he had to use a wheelchair and his ability to communicate with those around him became more limited to a point where he had been completely unresponsive since Christmas.
Jade said: “He had a little sister Lyla, she’s four, and if she came into the room he knew she was there and would give a big grin.
Lee spoke of his nephew’s “incredibly infectious smile and laugh” and Jade added: “You couldn’t help but laugh if Dylan was laughing, especially if he got his belly giggle out.”
Dylan’s funeral will take place at the Mintlyn Crematorium on Wednesday April 9 at 10.45am.
Donations to the Batten Disease Families Association, which supports families living with the illness, can be made via AJ Coggles funeral directors.