Mother's quest to find out why her son died: Tim Kelsey on how one victim lost his balance, then his life

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The Independent Online
MAUREEN Newman's son, Terry, died three years ago at the age of 21. She has been fighting for an explanation ever since. She wrote to Virginia Bottomley last September asking why he died from Creutzfeldt-Jakob disease (CJD) after taking a course of hormone therapy on the NHS to increase his height. She wanted to know whether Mrs Bottomley, as a mother, could understand her grief and whether Mrs Bottomley, as Secretary of State for Health, would concede that her department could have done more to ensure the hormone's safety.

Mrs Bottomley never bothered to reply. Her officials did not even send an acknowledgement. 'It's a sad reflection, I think,' Mrs Newman said.

The department, asked to explain why Mrs Bottomley ignored Mrs Newman's letter, did not answer the question. Mrs Newman, it said, had had a correspondence with the Prime Minister's office. Mrs Newman had written to Mr Major and had received, on each occasion, the courtesy of a response. Mr Major's office said it was looking into Mrs Newman's claim that the department was negligent in allowing the use of the hormone, despite evidence that it could transmit CJD. She has heard nothing of their inquiries.

Terry went on to the growth hormone when he was five, in 1975. He remained on it for 13 years, having injections three times a week. He grew to a mature height of about 5ft 4in. 'He was lucky to have been accepted,' Mrs Newman said. 'But we should have been told of the risk.'

The Independent has learnt that the medical community was aware of the potential risk of the therapy as early as 1968. Experiments showed that CJD could be transmitted between people by brain tissue, and the pituitary gland (from which the hormone was made) is a part of the brain.

Terry led a normal life until he started to lose his balance and the disease set in. 'It was the beginning of August, and he started losing his balance as if he was drunk,' said Mrs Newman. 'We just thought he was messing around.' Two weeks later they sent him to a doctor, but blood tests revealed nothing. Then a young doctor at the Middlesex Hospital, in London, asked whether he had taken the growth injections. The doctor said that must be the problem; the hormone injections were contaminated.

Terry started to lose control of his limbs and could no longer walk without support. In a long and painful process, CJD deprives its victims of their physical and mental faculties. 'I remember asking if it would kill him,' Mrs Newman said. 'He (the doctor) said 'yes' - and he died three and a half months later.'

At the time, Mrs Newman did not ask how the hormone had been contaminated, or whose fault it was that her healthy son was suddenly terminally ill. But in the final weeks of Terry's life, she began her quest for an answer. Scientists at the Medical Research Council, who had developed and made the hormone until the late 1970s, intimidated her. 'We weren't told to shut up, but it was made clear that we had to be quiet and not say anything.'

Terry was the fourth person to die from CJD who had undergone hormone therapy. Since the human organ hormone was withdrawn in 1985, nine people have died. Nearly 2,000 others are at risk of CJD after having hormone treatment. They continue to seek an explanation. The department continues to deny them one.

(Photographs omitted)