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Family of only U.S. mad cow case blames U.K.

From Miriam Falco and Elizabeth Cohen
CNN Medical Unit

Charlene is dying from the human version of mad cow disease, the only known case in the United States.
Charlene is dying from the human version of mad cow disease, the only known case in the United States.

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(CNN) -- A woman in Florida has less than three months to live as she wastes away from deadly mad cow disease -- the first known human case of the disease in the United States, according to the Centers for Disease Control and Prevention.

The family of the victim -- 23-year-old Charlene -- has been watching her deteriorate from the incurable human version of mad cow disease, which doctors say is caused by eating infected beef. Members of the family do not want to publicize their name.

In the past year, Charlene's appearance has changed from that of a healthy, vibrant winner of a college scholarship to a patient suffering from uncontrollable biting and hitting episodes and, later, to a moaning, bedridden invalid whose brain has deteriorated to the point where she can no longer speak or control her functions.

Despite their desire for anonymity, Charlene's family members -- who moved to the United States from England -- are talking to the news media because they are angry at the government of the United Kingdom, which they blame for Charlene's horrible condition.

"Whose fault is it? That's what I want to know," demanded Charlene's aunt, Sharon. "I want someone from the U.K. to come tell me ... Why is my niece lying in this position now?"

Doctors are sure Charlene contracted the human version of mad cow disease --whose scientific name is Creutzfeldt-Jakob disease -- in the United Kingdom, where she lived until age 13.

There have been 128 other human cases of mad cow disease in the United Kingdom.

According to the CDC, more cases are expected in the United States among people who were infected while living in the United Kingdom.

Charlene's family is accusing the British government of knowing about the presence of the disease in the 1980s, but covering it up.

"We'll forever be advocates for my niece and all the other victims," Sharon said. "We won't rest until somebody apologizes and is held accountable."

In a statement to CNN, the British government said victims like Charlene receive compensation. "Victims of variant Creutzfeldt -Jakob and their families have special needs which should be addressed," according to the statement. "We were very sorry to hear of this first case of vCJD reported in a U.S. resident, and extend our sympathies to the patient and their family."

A report commissioned by Parliament in 1996 said the government had not lied, but had simply failed to recognize the threat and was slow to warn the public that the disease could spread from cows to humans.

Charlene's father disagrees. "I just want them to feel the pain I'm feeling, the anguish," he said. "I would love for them to come here and see this."

In Charlene's case, the development of the disease was first noticed about a year ago, when she began to forget things and started losing her temper, her sister Lisa said.

"She came to me a couple of times and said, 'You know Lisa, I think something is wrong with me,'" Lisa said.

Charlene saw a doctor for the symptoms, who did not diagnose her with mad cow and instead prescribed an anti-depressant.

Later, the symptoms worsened, her father said. "Her hand began to shake pretty rapidly," he said. "We decided, well this can't be depression. Depression doesn't make your hand shake. It doesn't make you walk and stumble."

Charlene's family traveled to doctors in London before they learned the true nature of her condition. She was diagnosed with variant Creutzfeld-Jakob disease.

She and her family returned home to Florida when, last May, on her 23rd birthday, she was unable to walk on her own.

Then, Charlene started to go mad.

There were episodes when Charlene bit people and hit them. She became unable to control herself. Her family brought in a priest in hopes that he could help.

The disease continued its steady takeover of Charlene's body. By summer she could barely hug her brother and now, she can no longer hug him at all. She also has lost the ability to perform the simple task of swallowing.

Charlene used to offer to take care of her sister Lisa, before she needed so much care herself. "She always took care of us and now it's my turn to take care of her," Lisa said. "It's tough when she had such a bright future ahead of her."

As he watches Charlene fade away, her family members worry that they, too, may have eaten tainted meat years ago and will develop the disease. Scientists don't yet know whether the disease is transmitted in a single serving, or cumulatively, over time.

A double burden to bear, as Charlene's family tries to remember her not as she is, but as she once was.

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