'I need to know why my son died'

Stephen with his family: he died on 21 May 1995, aged 19

Stephen Churchill was 18 years old, a fit young man doing his A'levels so he could join the RAF, when his parents first noticed he was looking thin and a bit miserable.

His schoolwork deteriorated. Then he began to walk unsteadily: and then the hallucinations started. It took just 10 months before he needed care 24 hours-a-day, completely unable to walk or communicate.

"He was transferred to the local general hospital, to the neurological ward," recalls his mother, Dot.

"Then, after he had been there a couple of weeks, we were sat down and told that they thought Stephen had a progressive degenerative neurological disease, and they couldn't save him.

"Stephen was only 18, and we just didn't know what was going on."

In fact, Stephen was the first recorded victim of new variant Creutzfeld Jakobs Disease (nvCJD) - the degenerative brain disease thought to be contracted from eating beef contaminated with BSE.

It may have been a single meal of his favourite beefburgers or sausages that killed him.

Demand for answers

Stephen wanted to join the RAF

Forty people have now fallen victim to nvCJD. Their families are determined to fight for compensation and a full explanation.

The BSE inquiry is a direct result of their demand for answers.

"We always said we would let the scientists tell us the answer to this," says Dot Churchill. "Now we have that answer - that human BSE is the same as BSE in cows."

In October last year, 15 relatives of those who died gave evidence to the inquiry.

"We felt it was very important to give evidence to put a human face to the disease," says Mrs Churchill.

"We felt we wanted everybody to realise what was happening."

During their evidence, a harrowing picture emerged of the inability of the NHS to cope with a disease they had never encountered before.

Stephen Churchill's experience was typical.

"When he was in the local general hospital, it was an intensive care ward," says Mrs Churchill.

Dot Churchill: "The scientists can tell us the answers"

"There were a lot of elderly people, a lot of people dying. We felt they were under-staffed, so we had to go in to look after him for up to 10 hours a day.

"We found out that other patients had been feeding him because the nurses didn't have the time to do it.

"And really, the whole system just crumbled, because he was a young person dying of a terminal illness."

Mrs Churchill believes things have changed for the better since the recognition of nvCJD.

Her local health authority would now pay for Stephen to be cared for in a hospice. But, she says, care still depends largely on where you happen to live.

Fight for compensation

The long fight for compensation is more difficult. In March, 10 families began suing the government for exposing their loved ones to infected beef.

Stephen's father Dave runs a helpline for other CJD families with his wife

Mrs Churchill and her husband, Dave, have set up a help group for the victims' families called the Human BSE Foundation.

They are pressing for the Department of Health to set up a care package for nvCJD victims.

This would include someone to whom doctors can turn to for advice: and a fund of money to help local health authorities pay for the intensive, round-the-clock care that victims need.

In the meantime, Dot Churchill is hoping that the BSE inquiry will finally shed light on how her son fell victim to this cruel disease.

"I need to know why my son died. I need to know if there was a risk taken, which I believe there was.

A single beefburger may have killed Stephen

"We were all told in the 1980s that beef was safe to eat, yet they didn't have the evidence to say that."

But, she believes, the damage had already been done - in the mid-1980s, when BSE was already in the food chain but nobody was aware of it.

"I've got no reason to think that there will be no more victims," she says.

"Whether it will be tens of thousands, I have no idea. And neither do the scientists."