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Wednesday, 20 June, 2001, 15:13 GMT 16:13 UK
'How vCJD robbed us of our daughter'
Nina's family blame contaminated meat for her illness
Hopes are high that within the next five years there could be a cure for the brain disease variant CJD.

A London hospital is planning to open an NHS clinic specialising in the treatment of people vCJD and the race is on to find both a cure and test for the disease.

BBC News Online talks to one family about the devastating effects vCJD has had on their family.

At just 23 Nina Sinnott had "everything going for her".

She had just finished her degree at Manchester University and had celebrated with a trip to Egypt and Israel.

But as soon as she returned in August 1996 her mum Pene noticed that she was unusually withdrawn and depressed.

"As a mum you instinctively know where there is something wrong.

It is devastating to learn that there is nothing you can do to help

Pene Sinnott


"She had everything going for her. Then this came like a bolt from the blue. It is an absolutely devastating thing to be told that your child is dying from CJD."

Over the next few months Mrs Sinnott and her husband Mike watched Nina's condition deteriorate.

She lost the power to communicate and became very anxious and depressed.

Then she lost her powers of speech and her mobility.

They knew Nina was very sick, but said some doctors seemed quite dismissive of their concerns.

Mrs Sinnott said: "They didn't seem to listen, and that is intolerable when you know in your heart that something is seriously wrong."

She said the doctors who finally diagnosed Nina were most unsympathetic to the emotions of her and her family.

"The way I was told my daughter was dying was that they were doing lots and lots of tests. They said it could be Aids or it could be CJD and that was how I learned that she was dying

"It is devastating to learn that there is nothing you can do to help. Even with Aids and HIV there are cocktails of drugs that can be taken.

Just three months after she was finally diagnosed with CJD, Nina died in May 1997.

"We watched someone we loved deteriorate through no fault of her own, simply because of eating food."

Learning to cope

Four years on the Sinnott family is trying hard to come to terms with what happened, particularly Nina's younger brother Joel, who found himself an only child at the age of just 14.

Now they want to see scientists working towards a speedy diagnosis and then a cure.

"The quicker scientists learn how to slow down or halt the progress of this disease, the better.

"Then a patient showing signs could hopefully be tested at an early stage and given medication in order to prevent the rogue prions taking over."

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See also:

20 Jun 01 | Health
NHS to open CJD clinic
22 Mar 01 | Health
'vCJD may take 30 years to show'
24 May 01 | Health
CJD claims 100th victim
18 Mar 01 | Health
Medicines could carry vCJD
16 Mar 01 | Sci/Tech
Sore throat link to CJD
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