Families seek an end to CJD torment

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The Independent Online
FOR Terry and Shirley Warne, the public hearings of the BSE Inquiry, which start today in London, can't come soon enough. Ever since they began noticing something was awry with their 36-year-old son Christopher in January 1997, they have been pulled into the whirlpool of self-doubt and confusion that has affected all 23 families who have lost members to "new variant" Creutzfeldt-Jakob Disease (v-CJD) - caused by eating BSE-infected food.

"It's like a torment," said Mrs Warne. "You ask yourself again and again how it happened. A woman came down from the Edinburgh Surveillance Unit [which gathers case histories]. She asked questions for two-and-a-half hours about what he had eaten and what he had done, right from the age of five."

The beginning of the public part of the inquiry may help to lay those demons, which is why the Warnes travelled down at the weekend from their home in Ripley, Derbyshire, to a hotel in the Elephant and Castle, close to the hearings at Hercules House, near Lambeth North Underground station.

Today, at the first hearing, David Body - the solicitor representing the families - will make a statement on their behalf. The inquiry's chairman, Lord Justice Phillips, has asked one of the families and their GP to give a statement on Tuesday about the impact the disease has had on them.

For the Warnes, it was a sudden descent from having a son who was a health fanatic, to someone who could no longer walk unaided. "January last year was our 40th wedding anniversary ... Chris said he was feeling cold along one side of his body. He went upstairs and got down a duvet and sat wrapped up in it."

Then Mrs Warne found that he had begun sleeping on the floor; and then that he was becoming forgetful; and then that he had lost his job of three years as a senior systems analyst at Sky TV in Edinburgh. "They said he just sat and stared at the screen."

On 31 July Chris was hospitalised; on 20 October, at 4.15pm, he died.

The Warnes' main hope is that the inquiry will establish something. Sometimes Mrs Warne looks at a diary Chris kept as a student in Surrey: he used to cook chillis, with cheap mince, the sort known to have probably contained mechanically recovered meat with the most infectious particles.

"But all his friends ate the same thing," Mrs Warne says. "Why haven't they got it?" It's a question which may be beyond the reach of any inquiry.