THE parents of a North Yorkshire teenager who battled for months against the devastating brain disease CJD have spoken for the first time about his death.

An inquest into the death of 17-year-old Rory Potter, of Baldersby St James, near Thirsk, is to take place this month, but his parents, Chris and Wendy, fear they may never know why their popular and talented son became a victim of the horrifying condition.

Mrs Potter, 50, said Rory wanted to be an architect and was both musical and athletic.

When the couple, who have three other children, were told in April, 2000, that Rory had CJD they were advised not to tell him, but the youngster realised what was happening when he watched a CJD documentary just months before he died in February last year.

Rory is thought to be only the second North Yorkshire victim of the disease after Adrian Hodgkinson, 25, died in Harrogate in 1997.

Mrs Potter said: "Looking back there were signs that he was ill, but at the time we just dismissed it as teenage angst.

"He stopped playing the piano and then he said he couldn't run any more, but we didn't really connect the two."

Mrs Potter said Rory became restless, suffered terrible headaches and found it impossible to get out of bed in the mornings. His memory deteriorated and his schoolwork fell below standard.

After weeks of tests the diagnosis was given.

Mrs Potter said: "The disease is so relentless and so awful, it punches holes in your brain. It's a bit like Alzheimer's, but accelerated.

"When we heard the diagnosis it was like a death sentence. It's so extremely rare - it's like winning the lottery in reverse."

Mr Potter, 48, said Rory ate the same as everyone else in the family, and despite questionnaires and tests they are no closer to knowing what caused the disease.

He said: "We'll never know for certain."

The family cared for Rory at home with the help of Thirsk Carers and Martin House Hospice. Rory's closest friends also provided a lifeline.

Mrs Potter said: "I've learned to try and enjoy the present and live for the present, I think Rory was very good at that. We considered him as our gift ."

Scientific tests have revealed that the risk of CJD being transmitted through blood transfusions may be considerably higher than previously thought, it was revealed today. The Department of Health said it was considering barring people who had previously received blood transfusions from giving blood - something which could affect one-in-ten donors.

Updated: 09:52 Saturday, August 03, 2002