THE family of a CJD victim today told how a fun-loving father died after being reduced to a shell of his former self.
Graham Byrne, 39, from Southwick, died at the weekend of pneumonia brought on by the hereditary form of Creutzfeld-Jakob Disease, known as GSS.
His death came a year after he was sectioned under the Mental Health Act because of the severity of his symptoms.
Today Graham's wife, Maria, spoke of her agony at seeing her loving husband wither away.
And she called on the Government to boost care available to people with CJD and the new variant scientists believe is linked to BSE, mad cow disease.
Maria, 38, said: "It was devastating to see Graham go from what he was to a shell of a man.
"When he was diagnosed with the disease, I knew it was going to be a long illness and it did last a long time before he died. Although you know this is going to happen it doesn't hit you until it does.
"In some ways, the fact that it was drawn out made it more painful than if it had been more sudden.
"Now my life has totally changed. You have looked after or been with that person for 19 years, and known them for 23 years, and suddenly they've gone."
Maria added: "Graham worked as a cabinet maker by trade and he was always very active. Years ago, he played for the Sussex league in basketball and he used to DJ with his best man.
"He did lots of DIY and gardening and had a model railway which he loved. He also had four motorbikes at various times, including a Kawasaki, which he used to spend a lot of time with.
"But in the end he had to be washed and dressed and he couldn't communicate any more.
"I could see at first hand how the agony and pain these people go through is terrible.
"Graham used to get angry and frustrated because he still had quite a bit of insight into what was happening to him but he had no control over it."
Graham first developed the symptoms of CJD in 1993, at the age of 33, but it took some time for doctors to decide what was wrong with him.
Soon afterwards, they realised his mother, grandmother and uncle had all died of the same condition, though they had been diagnosed differently at the time.
Maria recalls how when, in April 1993, Graham was made redundant, he was initially thought to be suffering from depression.
She said: "He started getting more and more forgetful, a bit like people who have Alzheimer's, though he was far too young for that.
"We realised something major was wrong when one of the children, who had started at nursery, came home and asked him to make a rabbit hutch.
"Graham was a professional carpenter but he tried to drive a six-inch nail into a one-inch thick piece of wood - he just didn't know how to do it.
"From then onwards, things just went from bad to worse."
Maria believes that, as cases of CJD multiply, more needs to be done to raise awareness of its debilitating effects and to provide care for those affected by it.
She said: "I feel the Government should have more facilities available, especially for people under the age of 65 who end up with this.
"The problem is that people have to fit into specific categories too much at the moment.
"There are places for the old, the young and the mentally ill but there needs to be hospice-like care for those with things like CJD and other similar conditions that can affect people of all ages."
Despite the severity of Graham's condition, Maria and the couple's children, Rachel, 13, Liam, 11, and Daniel, seven, will always remember his defiant spirit.
She said: "Graham changed a lot to look at in the last few years and I would rather remember him for how he was in the family photo that was taken a few years ago.
"He was a loving father and husband who gave his best for us all. He was hard-working and a good provider.
"Even though his life was short, he did live it to the full while he still could and even at the end his character still shone through.
"Right to the end, even when he was very ill, you could see he had a sense of humour."
Daniel added: "Dad was always playing practical jokes. He used to run down the stairs in the morning with socks on his ears and once I remember him reversing all the way along the road because he couldn't be bothered to turn the car round.
"He always had a lot of character."
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