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From: TSS (
Subject: TEENAGER WITH vCJD 'stable' ?
Date: December 13, 2004 at 8:18 am PST

-------- Original Message --------
Subject: TEENAGER WITH vCJD 'stable' ?
Date: Mon, 13 Dec 2004 10:19:51 -0600
From: "Terry S. Singeltary Sr."
To: Bovine Spongiform Encephalopathy

Last Updated: Monday, 13 December, 2004, 15:24 GMT

Teenager with vCJD 'stable'
Jonathan Simms
Jonathan's condition is now considered stable

The father of a Belfast teenager who is suffering from variant CJD has
said he is very stable and no longer considered to be terminally ill.

Don Simms first realised his son Jonathan, now 19, was unwell in May 2001.

Jonathan, who was a talented youth footballer, was being a little clumsy
and had problems balancing - classic early signs of the prions that
cause vCJD to damage the brain.

Doctors first thought he had multiple sclerosis. But Jonathan's illness
was later confirmed as vCJD. He was given just months to live.

After a court battle, the family finally won permission for him to be
given the experimental drug pentosan polysulphate in January 2003. It
had not previously been tested on human beings.

Almost two years later, the family is happy with the results.

The general consensus is that Jonathan Simms is no longer terminally ill
- he is no longer in the last days or weeks of life
Don Simms

"Jonathan is, from the family's point of view, very stable," Mr Simms
told BBC Radio Ulster.

"We held a meeting in September of those responsible for his care in the
community, because we had to bring in outside services to allow us to
sleep," he explained.

"One of the agencies, the hospice, has been long gone because he was not
fitting their criteria. The other agency, Marie Curie, deals with
patients in the last six or eight weeks. They are now pulling out in

"The general consensus is that Jonathan Simms is no longer terminally
ill - he is no longer in the last days or weeks of life - we hope they
are right."

'Calculated risk'

Mr Simms said the decision to give their son the drug was a "calculated
risk based on 20 years of science".

Jonathan requires round-the-clock care
Jonathan requires intensive care

"The feared side effects that it would cause bleeds in the brain,
hydrocephalus, fits etc have not happened," he said.

"There was a 100% certainty that Jonathan would not be here today
without some form of treatment."

Mr Simms said the use of the drug was still unchartered waters but
pointed to new studies being carried out in Japan, France and America.

"We took a chance, we jumped into a safety net, it was a calculated risk
because we looked at many compounds, not just pentosan. We were not that
desperate to grasp at straws," he added.

"If we had been shown and, it is still the case, that pentosan was
causing Jonathan severe pain and stress we would have to take him off
that compound, we would have to kiss him and let him go."

being kept alive with drugs and a feeding tube is not 'stable' to me.
just my opinion...but maybe something will come along that will
bring him out of this...and that would be the purpose of keeping
Jonathan in such a state for this long period of time...hope is all
we have i suppose...


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