Jonny's story

Jonathan needs around the clock care at home

When Don Simms was told that his eldest son Jonathan had new variant CJD, the human form of mad cow disease, he was advised to take his family on holiday and wait for Jonny to die.

But Don, from Belfast, was not prepared to give up.

After internet research and phone calls to international experts, he found out about a drug with the potential to stop vCJD in its tracks.

But it had never been given to humans before.

At the High Court in London in January 2003, Don won the right to get the experimental drug Pentosan Polysulphate (PPS) pumped directly into his son's brain.

In the last three years, Real Story has followed the ups and downs of Jonathan's treatment and the toll it has taken on the Simms family.

The 21 year-old is now the longest living survivor of vCJD.

His father's triumph over the medical establishment has brought the treatment to other victims around the world in earlier stages of the illness.

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Real Story: Jonny's story - BBC ONE on Monday 12 December at 1930 GMT.