The treatment worked but the end was horrible - in a wheelchair, unable to talk and unable to feed himself

Patricia Wynn Davies charts the anguish visited on one family by the progress of CJD
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The Independent Online
Noel and Janet Baldwin first took their son Patrick to their local doctor in Gainsborough, Lincolnshire, when he was 18 months old.

"He didn't seem to be growing a lot, as he should have been," Noel remembers. After several inconclusive medical opinions, Patrick's school doctor referred him to Sheffield Children's Hospital. Aged nearly 14, he measured 4ft 8in.

Noel says he and Janet had more or less forgotten about their son's height. He had no problems and was a happy, active boy. He had treatment until he was nearly 18.

Noel concedes: "The treatment was good. He grew about eight inches." He was asked a similar question by the Government's counsel during the trial. He couldn't deny that he grew. "But the treatment made him die at a young age, leaving two children," Noel replied.

Fit, strong and a keen sportsman, he joined the Royal Navy, like his two brothers. The first sign of the terrible death that was approaching came in the summer of 1991, when he returned from sea to his home in Portsmouth with a bad cough.

By late October the awful truth was beginning to emerge. One of Patrick's brothers rang to say something was seriously wrong. Noel and Janet set off for Portsmouth at 4am. "He was unbalanced," Noel recalls. "He had to walk by the wall or by furniture to keep himself up. He had a patch over one eye because he had double vision. He still had this horrible cough."

He was attending the Royal Naval Hospital, but because he had CJD, the tests were all negative. By then divorced, he went to his brother's home in nearby Havant to be cared for.

"Patrick's sole ambition was that he was going to beat it," Noel says. But he declined steadily. By Christmas he was in a wheelchair. Noel and Janet took him home in February the following year. CJD does not show up in blood tests or X-rays, but by now there was no other explanation. He was 30. His speech was becoming blurred and his hands and head shook. Feeding became a problem. Loss of bowel control followed, and eventually a catheter and nappies. Janet and Noel sometimes changed the nappies four times in an hour. Luckily they had a downstairs bathroom.

"His mother had to drop his trousers and wash him - a 30-year-old. There was such embarrassment for him. The end is horrible. The sheer embarrassment used to bring stress on. But he never broke down."

They carried on as normal a family life as possible for as long as they could, with trips to football and the country in the wheelchair. But they were on the alert constantly for problems, Patrick biting into a glass, for example.

He recovered from a serious fever in May, but his speech went completely. "When his daughters came on the phone from Portsmouth you could see the stress," Noel remembers. The doctor gave him four hours to live during the fever. Instead, he suffered for six months, in which he was given round-the-clock care by Janet and Malcolm, was fed by tube and eased by morphine. He communicated with a nod or shake of the head or, latterly, a blink.

"It's a death you can't describe," Noel says. "It might take half an hour for him to respond with a blink." He slept with his eyes open for two months before he died. Miraculously, when they found him dead one December morning, his eyes were closed. "I felt a great ease for Patrick," Noel says. "I could say I was pleased. The embarrassment he had suffered; what he's gone through."