Johnny's story

Karen and Don Simms look after their son at home

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BBC One's Real Story exclusively follows the devoted family which fought to get pioneering surgery for their son, dying from new variant CJD.

Before he became ill, Jonathan Simms was a 17-year-old A-level student with a bright future ahead of him.

A talented footballer, he was undergoing trials for the Northern Ireland junior international squad.

Jonathan never smoked and rarely drank and, at 6 ft 2 in, was a fit and active lad.

It was in September 2001 that his parents, Don and Karen, first noticed changes in him.

Year to live

"Whenever he would be talking to me things didn't make sense," says Don.

"Late in the evening, when he would go through a doorway, he would hang on to the doorway.

"I thought it was drink or drugs. I feel so guilty about that now."

The diagnosis of vCJD came swiftly afterwards and the Simms family were told Jonathan had at most a year to live.

Jonathan was a talented youth footballer

But hope came when a search on the internet came up with information about a drug called pentosan polysulphate (PPS) - a drug tested on animals with scrapie, an illness closely realted to vCJD.

Most doctors predicted that injecting the drug into his brain would kill Jonathan but a few experts supported Don and Karen.

Last December they won a landmark High Court ruling backing their controversial wish.

The location of the hospital treating Jonathan and the names of the surgical team involved cannot be published for legal reasons. However, Jonathan is showing signs that the degenerative disease has been brought under control.

In rare diseases, you just can't wait for someones else to do it first. Someone's got to be first."

Dr Stephen Dealler

CJD expert Dr Stephen Dealler, who has backed the Simms family, describes the use of PPS treatment in vCJD cases as "a definite breakthrough".

"I got back an incredible response from other scientists who were horrified," he told the programme.

"But if something would be of reasonable advantage to the patient, you go ahead and try it while you can.

"In rare diseases, you just can't wait for someones else to do it first. Someone's got to be first."

'Two stark choices'

Since treatment began in January 2003, the Real Story team has followed the Simms family every step of the way.

Don told the programme how at one point he was nearly on the verge of putting Jonathan out of his misery.

"I recall going up to bed in the early hours and he was lying asleep. I actually contemplated putting a pillow over his head and smothering him."

But Jonathan's parents refused to give up on him.

"We had two stark choices, and only one answer. And that was for us to lie down and let this evil consume us or get up and fight."

Real Story: Monday, 12 May, 1930 GMT, on BBC One and the Real Story website.