THE father of a nine-year-old boy who died from a rare condition has spoken of his agony and helplessness as he watched his son’s condition deteriorate.

Mike Illingworth, from Witney, whose son Ben suffered from Sanfilippo syndrome, said: “He used to love being very active, but he lost his independence towards the end of his life.

“It is horrible watching your child slowly lose the ability to do things like walk, eat and speak.”

Ben’s illness, which prevents the body from properly breaking down some sugar molecules, worsened to the point where he could not walk or swallow food because he risked suffocation.

He died on October 25 last year at the John Radcliffe Hospital in Oxford.

The disease affects one birth in 70,000 but Ben’s twin brother Ollie, now 10, also has it. Both were diagnosed aged three.

Mr Illingworth said: “Hopefully we will have Ollie for longer but he is going to get worse and worse.

“As much as you know your children are going to have a shorter life you cannot prepare yourself for it and it doesn’t make it any easier.

“Although Ben had a bad deal and frustrations with his illness he was still a happy little boy and it is the worst thing in the world knowing there is nothing you can do to help him and to see him not being able to do the simple things.”

Mr Illingworth and his wife Fiona took Ben and Ollie to Helen and Douglas House in East Oxford for four years, and both boys went to Springfield School in Witney.

Mr Illingworth said: “Ben loved going to Helen House and as we approached he would get excited and start squealing with delight.

“I cannot praise Helen House enough for what they have done. It is very difficult for us to leave Ollie now so we are gaining our confidence before we take him back there.

“The first few weeks were really difficult but he has just got on with it and been fantastic. Sometimes you look at him and it seems that Ben is still with him.”

At Ben’s inquest on March 13 coroner Peter Clark found that he died of natural causes. Pathologist Steve Gould carried out the post mortem and said Sanfilippo syndrome is recognised to shorten a child’s lifespan and this was the cause of Ben’s death.

Dr Sandra Hallett, the family’s GP at the Cogges Surgery, said: “Concerns were raised about seizures in the last 12 months and there was evidence of significant progression of his syndrome.”