Mad Cow Disease Victim's Family Goes Public

November 2, 2002 CNN by Sanjay Gupta, Elizabeth Cohen, Julie Vallese 

But first, the mad cow mystery hits home. Our exclusive story of one Florida family's battle with this deadly disease.


GUPTA: In Florida, a British-born woman is bedridden, wasting away from the first case of the human version of mad cow disease diagnosed in someone living in the United States. A new CDC report warns American doctors to be on the alert for similar types of cases, and now the young woman's family is speaking out. CNN medical correspondent Elizabeth Cohen has this exclusive report.


ELIZABETH COHEN, CNN MEDICAL CORRESPONDENT (voice-over): Just a year ago, Charlene appeared completely healthy. This is the damage mad cow disease can do in less than one year.

LISA, SISTER OF CHARLENE: It's deteriorated her brain to a point where she can't talk. She can't control her functions. She doesn't eat anymore.

COHEN: Charlene -- her family doesn't want their last name used -- has less than three months to live, doctors believe. She's the first known case in the United States of the human form of mad cow disease. And the Centers for Disease Control says more cases are sure to follow: people infected while living in Britain.

Charlene's family members have decided to break their silence, because, before she dies, they want answers.

SHARON: Whose fault is it? That's what I want to know. I want someone from the UK to come tell me: Why is my niece lying in this position now?

COHEN: Charlene was born in England and lived there until she was 13. She moved to Florida 10 years ago. Doctors are sure she caught the disease in the United Kingdom, where there have been 117 human cases and thousands of sick cows. The disease has never been found in cattle in the United States.

As the disease always does, it lurked in Charlene's body for years before attacking. Then, in November of last year, Charlene, a vibrant young woman who had won a scholarship to college, kept forgetting things and losing her temper.

LISA: She came to me a couple of times and she said, "Lisa, I think something's wrong with me."

COHEN: Her family took her to the doctor, who prescribed an anti-depressant. Then things got worse.

PATRICK, FATHER OF CHARLENE: Her hand began to shake pretty rapidly. And, well, we decided, well, this can't be depression. Depression doesn't make your hand shake. It doesn't make you walk and stumble.

COHEN: In January, her family brought her to London, where doctors diagnosed variant Creutzfeldt-Jakob disease, the scientific name for mad cow disease in humans. By her 23rd birthday in May, when she'd returned home to Florida, she couldn't even walk on her own. Then, she started to go mad.

She bit people and hit them. She couldn't control herself. Her family brought in a priest, hoping for a miracle. None came. By summer, she could barely hug her brother. Now she can't even do that. Now she can't even swallow.

LISA: She was always there for me. She always said, "Lisa, if you need anything, anything, always you can come to me." She always took care of me. Now it's my turn to take care of her.

UNIDENTIFIED FEMALE: It's so upsetting, when she had such a bright future ahead of her and -- I'm sorry.

COHEN: Charlene's family blames the British government. They say the government knew in the 1980s that infected cows could make people sick, but covered it up.

PATRICK: I just want them to feel the pain that we're feeling, the anger we're going through, the anguish we're feeling. I would love them just to come here and look at what's going on here.

COHEN: The British government did not respond to numerous CNN requests for an interview. A report commissioned by the British Parliament in 1996 said the government had not lied, but simply failed to recognize the threat, and later was slow to warn the public mad cow disease could spread to humans.

Now Charlene's family is left to wonder: Are they next? Did they, too, consume tainted meat? Scientists don't know whether the disease is transmitted in a single serving or cumulatively over time.


CHARLENE, MAD COW DISEASE VICTIM: I just want to say that, on behalf of all the grandkids, congratulations.


COHEN: For the next three months, they'll try to remember Charlene as she once was, as she slowly slips away.

Elizabeth Cohen, CNN.


GUPTA: Thanks, Elizabeth.

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