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EDITIONS
Tuesday, 17 December, 2002, 15:36 GMT
Fighting to save his son
Don Simms
Don Simms has tirelessly campaigned for the drug

It is hard to imagine worse news than being told that your teenage child has vCJD.

And it is even harder to contradict doctors who say there is absolutely nothing medical science can do to help.

At the High Court on Tuesday two sets of parents who have refused to accept that verdict were told that their children should be allowed to get an experimental drug which offers slim hope of success.

Jonathan Simms
Jonathan Simms was a talented youth footballer
One of them, Don Simms, told BBC News Online about his campaign to get the best for his 18-year-old son Jonathan, made more urgent week by week as his condition worsens.

He found details of pentosan polysulphate on the internet, and has found doctors prepared to help his son get it. But obstacles have been placed in his way at every turn.

He has met each one head on - unafraid to demand answers both from leading doctors and government ministers, and eventually taking the matter to the High Court this week.

Pentosan
An internet search led to Pentosan
Don Simms told BBC News Online: "My boy would not only have wanted me to do what I'm doing now, but would have expected me to do what I'm doing now."

Although Jonathan - a year ago a talented youth footballer - still has some awareness of what is going on around him, remarkably, he was never told that he had vCJD.

Don said: "When they thought originally that he had MS, I broke the news to him myself and he was devastated at the thought of being in a wheelchair.

"How could I tell my boy that he wouldn't just end up in a wheelchair but would be dead in 14 months."

The first sign of the disease was simple clumsiness and lack of balance - classic early signs of the prions that cause vCJD damaging the brain.

"When walking through doorways late in the evening he was holding onto either side of the doorway.

Within weeks - before a neurologist appointment even arrived - he was unable to stand unaided.

The diagnosis came swiftly afterwards.

Don told BBC News Online: "When we found out that he had variant CJD my wife and I were just numb, absolutely numb.I knew the consequences, I knew that it was serious. I knew that it was fatal."

Desperate search

But even then, despite medical advice suggesting there was no hope, he resolved to hunt down a cure - or at least something to slow down the progress of the disease enough to give him a chance.

A search on the internet came up with a reference to the drug.

But his hospital trust, refused to allow the procedure to go ahead in its operating theatre.

This would have finished off many parents, but not here.

The longer that time goes on the harder the drug has to work, the more areas of the brain it has to get into

Don Simms
He managed to find a hospital in Germany willing to host the operation.

In secret, he hired an air ambulance to take his son there.

But, virtually as it sat on the tarmac at the airport, the Germans decided to pull out.

Attempts to persuade the government of the merits of the drug also came to nothing.

High Court action may well be the final throw of the dice.

Closer to death

However, the 18-year-old is deteriorating fast. Last winter he nearly died after getting pneumonia. This winter he might not be so fortunate.

His father told BBC News Online: "Every day we lose, every hour we lose is time lost, and time is of the essence here.

If he has this treatment and it doesn't work, it's too late, he dies, but his death will not have been in vain

"The longer that time goes on the harder the drug has to work, the more areas of the brain it has to get into because the replication of the prion protein is rapid.

"If something is not done rapidly, ultimately, we will lose him."

Ultimately, however, he knows that the drug is a long shot.

"If he has this treatment and it doesn't work, it's too late, he dies, but his death will not have been in vain, and that's the truth.

"In the death of my son, so much more will have been learnt from this. Others will benefit from this.

"vCJD was a man-made disease," he said, "and it is a disgrace that this country, of all countries, is doing so little to try to produce a way of stopping it."

See also:

17 Dec 02 | Health
05 Dec 02 | Health
01 Dec 02 | Health
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