DAVE and Dot Churchill's life was to change for ever when their son, Stephen, died in May 1995, the first known victim of a terrible disease, a new variant of CJD.

Stephen was still in his teens and had the prospect of a brilliant career in front of him when he was struck down by a disease which he contracted through no fault of his own. From possibly just one mouthful of beef infected with BSE, Stephen, 19, contracted the human equivalent of mad cow disease.

His death from the degenerative illness created headlines, and since then his parents have been under the media spotlight, and been expected to comment every time there has been another death from the disease or a research development.

If Mr and Mrs Churchill and Stephen's sister, Helen, had been the victims of a crime, perhaps an assault or a burglary at their home, they would have had almost instant help and succour from Wiltshire Victim Support.

But in those early days, and the months which grew into years, they had little or no support which led them to set up a helpline for other families. Requests for help to social services and health authorities, not just by the Churchills, but also by the families of other victims in other parts of the country, met with little response.

Similarly, the battle for a public inquiry in those early months and years when they were desperate for help and support fell on stony ground at Government level.

With admirable tenacity and determination, the Churchills kept up their battle for justice, not so much for themselves as they have always stated, but for the families of all victims of this cruel disease, which scientists believe crossed the species barrier from sheep to cattle and then to humans.

Government ministers were much quicker to respond to the lobby of the farming industry and come up with compensation deals for farmers who had their herds destroyed.

This week will be a landmark for the Churchills and all the other families who have lost loved ones from this appalling disease.

The eventual death toll is unknown. Will it continue at the current rate of just over one a month, or is there a timebomb ticking away with new variant CJD incubating in thousands if not millions of people?

The scientists simply do not know.

Todaythe Churchills will hear the result of the public inquiry they fought so hard for, battling for justice for themselves, for other families and all the victims who have died.

Secondly, it is likely that the Government will today finally announce a compensation package to help the families of new variant CJD victims whose lives have been blighted by having to deal with the disease.

On Tuesday, Wiltshire Social Services launched a ground-breaking video aimed at social services staff and health professionals throughout the country to enable them to understand and help the families of CJD victims.

Social Services director Dr Ray Jones publicly acknowledged that his department stepped in after the Wiltshire Gazette publicised the plight of the Churchills, and the problems they had experienced seeking help from the department in the early days, and have continued to experience from the Wiltshire Health Authority.

The families of CJD victims should never have had to wait so long for the help they needed so desperately.

Perhaps the greatest injustice of all, was that successive ministers under the last Government, failed to heed the calls for justice from the CJD victims' families and order a public inquiry.

It would reassuring to think that lessons perhaps have been learned from such tragedy.