Agonising decline that led to first diagnosis of new illness

Stephen Churchill's parents realise now that the car crash was the first sign, writes Charles Arthur.

"It was about August. He was simply driving near home in his mum's Ford Fiesta and he went across the white line, head-on to an oncoming army truck," said Dave Churchill, Stephen's father. The car was a write-off. Stephen couldn't explain what had happened. Nor could his passenger. Both were lucky to survive - "long legs, and a seat a long way back", said Mr Churchill yesterday.

But for that, the first Briton to die of the "new variant" of Creutzfeldt- Jakob disease might have been just another road statistic.

Mr Churchill feels now that the disease's name (v-CJD) is confusing: "It would be better to call it something else, like 'florid plaque disease' - which is what you see in the brain sections - to distinguish it from the normal form," he said.

The "sporadic" form of CJD usually affects people over 60, and has no known cause. By contrast, v-CJD has so far affected people under 50, and is almost certainly caused by eating BSE-infected food.

But the Churchills had no inkling of that. Instead, they endured months in which the 18-year-old slipped into an incurable, remote depression and gave up school. In November, his mother took him out shopping, and stopped at a cafeteria. They ate a small meal and went back out to the car. "Did you enjoy that?" she asked. Stephen didn't remember it.

Doctors insisted it was simply depression. Stephen was given medication. By December he was losing his co-ordination and could not sign his name. He spent that Christmas with them - "the most miserable we've ever had", recalled Mr Churchill.

It was so bad that on 3 January 1995 they demanded another consultation with the psychiatrist. Stephen was admitted to hospital. The doctors seemed reluctant to diagnose CJD in an 18-year-old - it would make medical history - but on 13 February they did. Mr Churchill recalls his frustration. A diagnosis "would not have helped Stephen, but it would have taken away the doubt, which is what breeds fear".

Early in May, Stephen was released into a care home, where his family recreated his own bedroom - "his Pamela Anderson posters, his beer bottle collection, all those things". They were prepared for his inevitable death to take years; instead he died two weeks later, on 21 May - the first, and youngest, Briton to die of v-CJD.

When Stephen Dorrell made his fateful announcement last March, "it gave me a focus for my anger", said Mr Churchill. "It's as if Stephen had been killed by a hit-and-run driver, and then 10 months later the police come and say 'By the way, we've arrested so-and-so who lives down the road'." Since then, the Churchills have applied pressure for a judicial review. They have never directly blamed beef for their son's death: preferring to let the scientists do that. "We just ask questions," said Mr Churchill.

After Stephen died, the Churchills became closely involved with the national CJD Support Group. Mr Churchill's advice to anybody whose child or relative dies of v-CJD is: "We would encourage anybody to go to the media after their loss." Publicity is a weapon, he believes, which will eventually cut to the answer: whose fault was it that these people died?

tThe National CJD Helpline is on 01380 720033.

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