Page last updated at 00:33 GMT, Friday, 18 December 2009

'Grant went to bed every night, expecting to die'

Grant Goodwin, who was 30 and from Lanarkshire, is thought to have become the first person in the world to have died from a new variant of CJD.

In an exclusive interview with the BBC, his father Thomas Goodwin spoke of Grant's diagnosis and deterioration and the effect that had on their family and friends.

Thomas Goodwin, Grant's father
Thomas Goodwin says his son's illness was heart-breaking
Grant was a very happy-go-lucky person. He was a bit of a jack-the-lad kind of person, lived life, was a bit of a party animal, loved the good life.

He lived abroad and eventually settled in the Channel Islands with a smashing group of young chaps who we've come to know very well who came to see Grant when he was dying.

Very lovable, big chap and we thought the world of him.

Unfortunately cut down in life. Grant's illness and his death has affected a vast amount of people.

His girlfriend in Guernsey knew more about his early symptoms than we did because there was a total change in his character.

The only way the doctor could describe it to me was the 'human form of mad cow disease'

He became depressed and that wasn't Grant, and his depression went on to jealousy. So they went to see his doctor, who diagnosed and treated him for depression.

In May, my wife Margaret went over and he was complaining about pains in his legs and in his head.

In August, 2008, Margaret went over again and the deterioration in three months was absolutely unbelievable.

He couldn't support himself, he fell twice when he was walking and he had to be supported. My wife phoned me and told me that I must arrange a flight for Grant and get him home as soon as possible.

We thought it was a tumour, and his memory had started to go - his short-term memory was bad, he couldn't remember what he had had for breakfast.

When I saw him coming through arrivals a great knot came into my stomach. It was heart-breaking.

He came through like a drunk man and the plan was to bring him home, but when I saw him, we took him straight to hospital.

They eventually diagnosed him with variant CJD. It was heart-breaking for myself.

The only way the doctor could describe it to me was the "human form of mad cow disease".

Grant couldn't take it in - because of his illness, five minutes after he was told, he had forgotten what he had been told.

Grant Goodwin
It is thought Grant Goodwin incubated the illness from early childhood

He went to bed every night, expecting to die.

If we had the choice we wouldn't have told Grant, but Grant didn't have any hope.

Once the illness set into Grant, the brain cells were slowly getting killed off and he became someone else. He was seeing things, he was paranoid, it was absolutely unbelievable what that illness actually does to people.

A week after Grant was diagnosed, one of the specialists agreed that Grant had variant CJD and they did some gene tests.

And it was about three weeks after that, Prof Peter Rudge came up from London and it was him that told us that Grant was the first with his gene type in the world that's died of variant CJD.

I just feel we need to get this out in the open, because people need to see the early symptoms.

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