By Melissa Jackson
BBC News Online
A family which was told its daughter had the first case of vCJD in the US, has seen her defy doctors' predictions that she would not live to see her 23rd birthday.
Charlene Singh in healthier days
Twenty-five-year-old Charlene Singh, who lives in Florida, was diagnosed with vCJD in March 2002 and given three months to live.
Although she is in a fragile state, and requires 24-hour care, she is surviving without the use of drugs.
Charlene, who lives in Florida, spent the first 12 years of her life in the UK, which is where her family believe she contracted the debilitating and fatal disease, which affects the brain.
Variant Creutzfeld-Jacob Disease (vCJD), is also known as 'Human BSE' (bovine spongiform encephalopathy) which in cattle causes so-called 'mad cow disease'.
In humans it is characterised by the appearance of holes in the brain tissue, which becomes spongy and is believed to have passed from cattle to humans through infected meat.
Charlene as she is today
Charlene's aunt, Sharon Singh-Passley, said that while growing up in the UK, Charlene would have eaten all the usual foods children enjoy, including hamburgers, sausages and steak-and-kidney pie.
Her condition only began to materialise after she graduated from the University of Miami in May 2001 with a business degree.
A few months later, there were noticeable changes in her behaviour.
Her aunt said: "She became withdrawn and was also tearful at times, but we just put it down to burn-out because she had worked so hard to get her degree."
Her performance at work began to deteriorate and she was forced to quit in December 2001, after she crashed her car.
Her mother Allison, who had stayed in the UK, became concerned that her e-mails did not make sense.
Other members of her family noticed she would lose her train of thought during conversations.
Sharon said: "At Christmas, my brother bought her a black dress.
"When I asked her if she liked the present from her Dad, she said 'What gift? I didn't get a gift'."
By January, her mother was told there was something seriously wrong with Charlene, although US doctors diagnosed it as depression.
Mrs Singh took her daughter back to England in February 2002, where her condition deteriorated and she was taken in to hospital, where she was diagnosed with vCJD, after a tonsil biopsy.
When she realised the severity of her daughter's illness, Mrs Singh left her job and returned with her daughter to the US, where she has become Charlene's primary carer.
Sharon recalls how during family prayers on a Saturday, Charlene would look at her father and mouth the words: "Am I going to die?"
She said: "Her father would say 'you are sick, but we're doing everything we can to help you'."
She is now unable to speak, move or eat on her own.
Charlene undergoes hyperbaric treatment
Through their research on the internet, Charlene's family had heard about the successful treatment of vCJD in the UK with a drug called quinacrine - which was commonly used to treat psychosis.
Charlene tried the drug for three months, but it had no noticeable effect.
In fact it made her skin turn yellow and she was taken off it because it was found to be damaging her liver.
Her father Patrick said: "To see a young girl who has achieved so much at university and is so smart and to see that all taken away from her is terrible.
"It is quite remarkable that she is still alive."
Her family believes she owes her extra time to hyperbaric therapy, which she was first given in October 2002, and has received ever since.
During this process she is put in a pressurised oxygen chamber four times a week, which helps to increase the oxygen supply to her blood .
Her condition has stabilised since receiving this treatment and her family believe this has helped her survive, although they know they are just prolonging the inevitable.
Sharon said: "Charlene is trapped in her own body.
"But she wouldn't want to die not letting the world know about her disease and how it has cut short her life."
Sharon's has pledged her support to the US's CJD Foundation and intends that some good can come out of her niece's illness.
She said: "I would like to set up a scholarship in her honour so that people can learn more about vCJD and
so that others can benefit where Charlene has not."
A total of 141 people have died from vCJD in the UK since the disease emerged in 1995.