A picture of Claire three months before she died

Claire had walked into Frenchay hospital....but a

fortnight later she left in a wheelchair. It was as though being admitted to hospital had finally allowed her to admit the truth to herself. Annie had always known her daughter was intensely private and proud; now, she began to grasp the lengths she had gone to to hide her deterioration. All those jagged shifts in behaviour made sense. Only recently, a relative who phoned to ask if Claire could babysit had hung up in disgust because he said she was drunk (her speech was already slurring).

Annie, who had tentatively asked her daughter about anorexia and been rebuffed with a stout, 'You must be joking', discovered that Claire had actually been avoiding family meals because she was having trouble swallowing. And Claire's solitary evening runs, it turned out, were an attempt to build up strength in the legs which were so unaccountably failing her. As for that spooked look she got in the eye of her tantrums: 'I thought it was rage; now I could see it was terror.'

The night they got back from the hospital, Annie and Wayne, an ambulance paramedic, trawled the internet looking for neurological disorders that fitted Claire's symptoms. One kept coming up: new variant Creutzfeldt-Jakob Disease (nvCJD). Believed to be caused by an abnormal form of brain protein, nvCJD was increasingly seen by scientists as being the human form of bovine spongiform encephalopathy (BSE). At least, Annie McVey thought, it's not that. Annie's job at the Trust was risk adviser, for heaven's sake; if anyone knew about medical odds it was her. Statistically, the chance of her child contracting mad cow disease - well, it was practically science fiction, wasn't it?

As the tests on Claire continued, specialists ruled out some of the nastiest and grimiest spanners in the human works. 'I told her, whatever you've got you are really rare, and she quite liked that,' Annie says. 'She'd always felt different and special - well, she was different and special - but with being rare comes all the stuff like, "we can't give you a treatment".' Not long after, Annie dived into a hospital loo and opened the doctor's note she had been given to deliver to another consultant. Inside was an incredulous scrawled query: 'McVey: nvCJD!!???'

Mother and daughter made another deal: 'I told her I would always be truthful and that I would never ever leave her.' And she never did. (Even at the graveside in January, Annie remembers thinking she had to take Claire home. You can forgive her confusion: it had taken her daughter less than five months to die.) It was as though someone had put a tape of Claire McVey's childhood in the video and held down the rewind button. The years ripped past, from skiing holidays and blooming sophistication all the way back to nappies and broken nights. 'When Claire was little, every day she could do something more; with CJD, every day she could do something less.'

Only two months earlier, in May, just before Claire turned 15, she had stood in the kitchen as her mother made dinner and said, 'When I'm 16, Mum, I'll be able to have sex.' 'Well, you don't just become 16 and have sex,' snorted Annie, and Claire laughed and laughed; she enjoyed teasing her mother. In fact, she had pretty firm views about boys - you didn't want to be getting yourself into that kind of thing too young. Claire was everyone's mate, but there was still no boyfriend. Wayne reckoned the lads were intimidated by the smart, funny girl: 'She would torture them. Couldn't help herself coming out with these one-liners.'

And her beauty must have been daunting too. Recently, she had shot up to 5ft 10in and was on course for a supermodel six foot. Blonde with blue eyes, milky skin and a generous mouth, Claire McVey was a rambling English rose. So, when it came to the moment for facing facts - for saying what Claire's real future would be, not thinking of all her possible ones - her mother dug in her heels. 'The consultant and the ward sister took me into the office and I said, "I am not grieving for her until she's dead." And they said, "Don't you understand what we're saying, Mrs McVey? This is a progressive neurological disorder." I understood perfectly. Yes, she was going to die. Yes, it's going to happen in months not years. Yes, there was nothing they could do about it. But I'm not grieving for her while she's alive.'

After that, the family got a new rule: no tears in front of Claire. If you wanted to cry, you left the room.

Almost any other disease, and mother and child would have had a fighting chance. But the enemy was no longer around to be engaged: it had planted its bomb maybe a decade ago, lit the slow-burning fuse and quit the scene.

All that remained was to manage the surrender. Annie got hold of a voice box so that Claire, whose speech was failing every day, could record some favourite phrases for use later on. They included 'Bugger off' and 'I love you'. By the end, that pretty much covered what any human being needs to say to another.

Seventy-five people have died so far of variant CJD (the 'new' prefix no longer applies). As epidemics go, it's been pretty quiet. After the doomy headlines of the mid-Nineties, when three million cattle were burnt in a bovine Valhalla and humans were said to be heading in their thousands for the same fate, the BSE crisis has slowed to a trickle of scare stories about school food (could this have been a key source of infection in the late Eighties?), the so-called Queniborough cluster in Leicestershire and, most recently, the safety of dental instruments.

Driving on a balmy summer's evening from Barnstaple to Kentisbury Ford to meet Annie McVey, I try to imagine what I would feel if it were my child who was one of the 75 dead - or only 75 dead, as the living tend to refer to them. Around the Devon hamlet where the McVeys live, England is at her most voluptuously come-hither. The hedges are high and creamy and in the fields the cows swish, dreamy with contentment. On one five-bar gate, I spot a torn Union Jack poster with a slogan: 'Support British Beef!'

The BSE crisis had the distinction - some would say the disastrous drawback - of being bound up with a product that was not just made in Britain, but at some gut level was felt to be the stuff of which Britain was made. By extension, variant CJD - a beastly disease in every sense - became an unpatriotic outrage almost before it registered as a source of human suffering. To stand up against it, to proclaim your disbelief in it - and to mock the joyless health inspectors who tried to monitor what went in our fridges - was to fly the flag. To succumb to it, on the other hand, was a source of secret shame. 'Best not mention it,' a mother on Merseyside, whose son was among the first to die, was told.

Another family held out for their boy to be buried after the authorities insisted on cremation - as if wanting to erase all trace of him, like a Plague victim or, indeed, a mad cow. The family's priest had to intervene when they were told that the police would come and impound the body. 'I'll bring this man to the church,' the priest said, 'and keep him in the church.' Eventually, a compromise was reached: the grave was lined with lime and the ceremony monitored by two council officials in white coats. 'It's just as if they punished him for something,' the boy's mother said. He had died of a disease that wasn't meant to exist.

'I don't have any problem with the farmers, except when they go round saying BSE has nothing to do with vCJD,' sighs Annie McVey. 'I know a lot have killed themselves because of money worries and I don't want to get into a debate about whether my daughter's life is worth more than a farmer's life - that's just hideous.'         to continue reading this story please click here