Mother whose daughter died of CJD fears she has disease

CJD victim's mother fears she may have disease

July 28, 2001 Press Association by Tahira Yaqoob

The mother of Britain's youngest CJD victim fears she could have contracted the killer disease.

Annie McVey's daughter Claire died of variant Creutzfeldt-Jakob - the human form of mad cow disease - at the age of 15.

Now her mother is chronicling her physical and mental condition daily in case she too has the brain-wasting disease.

If she has vCJD, it would be the first time the condition has affected two members of the same family.

Former nursing manager Mrs McVey, 43, of Kentisbury near Barnstaple, north Devon, has put friends on "dementia watch" to alert her and the world's media if her mind starts to deteriorate.

She has been wheelchair-bound since Christmas last year and suffers from shaking hands and forgetfulness.

Doctors have failed to diagnosis her condition but have concluded she is suffering from a neurological illness. Variant CJD can only be traced after a victim has died.

Mrs McVey first began to worry about her physical and mental state five months after her daughter died in January last year.

Claire had become moody and erratic in the months leading up to her death. Her mother nursed her until she took her last breath.

After her daughter died, she took up the mantle of demanding answers from Government and has devoted herself to researching the condition full-time.

But the stress of being a key campaigning voice took its toll and in June last year, she found herself suffering from shaking and had trouble walking.She suffered temporary blindness and had a period of five days when she was completely confused about her surroundings.

Mrs McVey said: "My initial thought was that it was psychological - I was doing it to myself because Claire went through it.

"Then I thought, perhaps it is variant CJD. I put people on dementia watch. "When I had my period of dementia, that was when alarm bells went off.

"I do not have a diagnosis but as time goes on I do not think it is CJD - although with CJD, you do not know until someone dies.

"The whole stress of the situation sent my body into meltdown. I am happy to accept it is psychological."

Mrs McVey still campaigns fiercely for greater awareness of the condition which has claimed 107 victims to date.

She was left furious by reports of compensation lifelines being thrown to farmers affected by foot-and-mouth disease and was left horrified as she watched similar blunders made by the Government in reaction to the crisis.

She said: "I thought this Government was going to right some of the wrongs. "I fell extremely let down. We have heard stories of farmers getting compensation within days - here some people have been waiting six years.

"There is no way we can replace our stock. Farmers can replace and rebuild but it is beyond us."

The mother of two, who has a 20-year-old son James, has chronicled her daughter's deterioration in a BBC2 documentary called Home Ground Forever Fifteen, to be broadcast at 7.30pm on August 9.

She said: "Claire is stuck in being forever 15 while her group of friends is getting older.

"She was condemned to never growing up."

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