Yesterday, in a harrowing narrative, her father Roger Tomkins relived the agony of the disease which has left his "darling daughter" bed-bound and clinically blind, requiring 24-hour care because she is in constant danger of drowning in her own saliva.
In moving testimony on the second day of the BSE Inquiry, Mr Tomkins, an engineering director from Tonbridge, Kent, told how for months doctors and psychiatrists had struggled to produce a diagnosis for the worsening collection of symptoms - such as depression and inability to walk - afflicting his second daughter.
Clare, who is still alive, was eventually diagnosed in August 1997 as having "new variant" Creutzfeldt-Jakob disease (v-CJD), almost certainly caused by eating food infected with BSE, or "mad cow disease" - even though she was a strict vegetarian since 1985. After hearing her father speak yesterday, Lord Justice Phillips, who is chairing the inquiry into the causes of BSE and the events leading up to March 1996 - when the last government announced the existence of a link between the two fatal diseases - said: "I felt it was important that your evidence should be given at the start of this inquiry."
At the hearing in London yesterday, many other members of families who have lost members to v-CJD cried as they heard Mr Tomkins' description of his daughter's descent from her normal self.
Clare, her father recalled, had been displaying peculiar symptoms since January 1996, notably complaining of an odd taste in her mouth and worsening depression. But her family doctor, and subsequently a number of specialists, reckoned the cause was mental rather than physical.
More than a year after the Government had publicly announced the existence of v-CJD, and government experts had written to psychologists and psychiatrists to ask them to look for particular groups of symptoms, one psychiatrist treating Clare insisted that her weight loss, crying, numbness, agitation and erratic balance were caused by psychiatric illness.
As the illness worsened in 1997, "her hands turned inwards, her feet too. She became knock-kneed, and her hips disjointed, so she could not walk", Mr Tomkins said. "She would make more and more sudden head movements. Her eyesight deteriorated and she cried constantly. "The worst thing," he said slowly, "was sometimes at night, when she would howl like a sick, injured animal. She started to hallucinate. It is now clear to me that she was tormented in her condition."
In April 1997, Clare ceased to recognise her mother, Dawn, and a few weeks later declared that "Dad is dead". Yet by this stage neither doctors nor psychiatric specialists had diagnosed v-CJD. She was admitted to a private psychiatric clinic which prescribed "reward therapy" in which she would be allowed treats such as watching television in return for raising her self-esteem by carrying out tasks such as washing herself.
"I couldn't see any reward that would be sufficient to motivate her," Mr Tomkins said. "But we were told that Clare had a psychiatric condition, in which she was torn between leaving home and staying with her family. The psychiatrist was absolutely adamant this was the source of the trouble." He was told that the family must not visit her for two weeks as part of the therapy.
Eight days after leaving her, he was told by the clinic that they had stopped the therapy because they were concerned about her health. Mr Tomkins and his wife rushed to see their daughter. "We were horrified at what we saw. We found Clare in a physically and mentally exhausted state. Her skin was covered in carpet burns and her whole body in tiny cuts. We were told she had inflicted these upon herself when she got so scared she hid under the bed. My darling daughter in her state of fear and anxiety obviously cut herself on the bed's springs."
Clare was taken to the casualty unit of a nearby hospital, where Mr Tomkins insisted that the cuts should be catalogued. She was then admitted and cared for in an acute ward. "I haven't enough praise for the staff there," he said. Pointedly, he did not praise the private clinic's care.
Clare is now at home where her health authority provides constant care. "We are - I hesitate to use the word lucky - but fortunate that we have such a care package," said Mr Tomkins. "It is the very minimum that you need."
As he finished, one of the panel members asked him if he had any views why his younger daughter - and not any other member - had fallen ill, he replied: "I do ask myself that question every day. I look at people ... and ask, why my daughter? It's such a miniscule risk but it's happened, and the results are terrible. It's not just like dying. She has lived in hell for 18 months."
Doctors are still unable to say how long Clare will survive. There is still no cure for v-CJD.Reuse content