Great Yarmouth father raises awareness of Batten disease following the death of his seven-year-old son

Dylan Sinclair died of a rare and incurable disorder called Batten disease. His father James is now

Dylan Sinclair died of a rare and incurable disorder called Batten disease. His father James is now fundraising for the organisation that offers help and support and hoping to find a cure. - Credit: Archant

A heartbroken father has thrown himself into raising funds and awareness after his seven-year-old son died from a vanishingly rare and terrible disease.

James Sinclair said his son Dylan suffered a horrible death with no treatment available to slow the effects of the degenerative illness which is only seen in seven to 10 children in the UK each year.

The 28-year-old gardener of Nelson Road South, Great Yarmouth, and his then partner Gemma Robinson were devastated to learn that their lovely little boy had Late Infantile Batten disease, a terminal condition that means sufferers will become blind and disabled losing all their abilities.

'It has been very difficult and upsetting,' he said. 'It was almost like watching him having a slow, painful death and you know what is going to happen because there is no cure.'

'Batten disease is not well known and I am trying to do anything I can to tell people about it as well as raise money for research into a cure and treatment as well as to support families who have a child with the illness.'

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At first all was well with baby Dylan, who despite a difficult birth, seemed to thrive.

But as he grew older he never spoke a word and displayed autistic behaviours, playing with toys in a different way to other children and becoming unusually focussed on things.

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The first sign that anything was seriously wrong, however, came when he suffered his first seizure at the age of three.

The shocking suddenness of the attack saw his mother and grandfather pressed into action as life-savers working hard to resuscitate him and he was airlifted to hospital.

A series of tests followed and he was put into an induced coma and medicated.

After that the fits became more frequent and difficult to control and soon he was unable to walk or see and had to be tube fed.

Eventually he was bedridden and died at home on March 21.

The experience has shattered Mr Sinclair and his close family, but the effort of fundraising is helping to create a loving legacy for Dylan that means other people might benefit.

Helping him on his mission to spread the word about Battens is his step-daughter Natasha who at the age of eight has donated all her hundreds of soft toys to the Dylan Teddy Tombola which is currently touring car boots in the borough.

Mr Sinclair hailed her support and that of his wife Emma with whom he has three-year-old Toby, his three sisters and his mother who all had a hand in wrapping gifts for the lucky dip and filling sweetie cones.

So far he has raised £640 and hopes to add to the total when he pitches up at the Yarmouth Racecourse car boot on Sunday. As well as the tombola there is also a general toy sale.

Benefiting from his efforts is The Batten Disease Family Association who have provided him with balloons and promotional material to signpost his charity stall.

An online donation page has been set up in Dylan's memory at

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