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Family keeps hope in U.S. human mad cow case

Charlene receives constant care from her family, who do everything from feeding her to taking her to doctors.
Charlene receives constant care from her family, who do everything from feeding her to taking her to doctors.

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A young woman who contracted the human form of mad cow disease in England has outlived predictions.
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(CNN) -- At 24, Charlene should be finishing up her master's degree or taking other steps to plan her future. Instead, she's become a statistic.

Charlene is the only person living in the United States with the human form of mad cow disease, according to the Centers for Disease Control and Prevention. (Her parents don't want the family's last name revealed for reasons of privacy.)

Her case has taken on renewed interest since the U.S. Department of Agriculture confirmed the first appearance of mad cow disease in the United States last month, sparking concerns about the nation's beef supply.

Doctors at the CDC said they are sure Charlene caught the disease while living in Britain.

She lived in England until moving to Florida 11 years ago at age 13. So far, 143 people in Britain have contracted variant Creutzfeldt-Jakob disease or vCJD, also known as the human form of mad cow. Six of them are still alive.

The disease -- linked to eating infected beef -- was first reported in the United Kingdom in 1996. There is no known cure for the degenerative, fatal brain disorder. This disease is not to be confused with classic Creutzfeldt-Jacob disease, which has been reported for decades. The National Center for Health Statistics show cases of classic CJD occur in about one in a million people and usually strikes people in their sixties and seventies.

According to the CDC, Charlene sought medical help for memory loss and depression in November 2001, and a month later she reported involuntary muscular movements, changes in her walking and difficulty in dressing.

Her condition continued to worsen. In less than a year, Charlene was bedridden, unable to eat by herself and no longer able to communicate with family members. Doctors had given her a few months to live when CNN first interviewed her family in October 2002.

Since then, her parents said Charlene has not gotten any better nor has she become any worse.

"She has stabilized from the last time we saw you," said Charlene's dad, Patrick. "... They gave her three months at that time, and it's over 15 months now ... and she is still here. She has not deteriorated."

No cure available yet

How remarkable is it that Charlene is still living? U.S. and British health officials declined to comment about her condition, citing patient confidentiality. But a statement from the British Department of Health illustrates how little is known about variant Creutzfeldt-Jakob disease.

"It remains the case that there is still much that we do not know about vCJD," the statement reads. "For example, the route of infection, the incubation period, the level of exposure required to cause the disease and the possible role of genetic susceptibility. It is likely to be some years before we are able to make soundly based predictions about the future course of the disease."

Modern medicine has found no cure yet, but members of Charlene's family said they will not give up. They bathe and feed her, caring for her around the clock.

"How Charlene's mom does it, I don't know," Patrick said. "I'm amazed every day. It's tough on her -- it really is to be in this room every day. Because you can't leave. Sometimes she might need help breathing. ..."

A neurologist who saw CNN's original report on Charlene's condition was willing to try something new. He offered to give Charlene hyperbaric treatments -- pumping pure oxygen into her lungs -- which may help the brain function better. She gets treatments three times a week.

"When she first came in, she was virtually comatose, nonreactive," said Dr. Richard Neubauer of the Ocean Hyperbaric Neurologic Center in Lauderdale-by-the-Sea, Florida. "[She] could not obey commands, did nothing."

Neubauer said this procedure is no miracle treatment. He said he felt it was worth a try with Charlene since the treatment has alleviated other brain disorders.

"After 192 treatments, she's not only alive, but she's trying to talk," he said. "She's responsive and trying to respond to simple commands. [But she] still [has] a long way to go."

Charlene's dad agrees that the treatments have helped.

"She has put weight on. She looks brighter. She moves around a lot more. She murmurs a lot more," Patrick said. "So yes, I would say that there is some physical difference."

Charlene's family members said the recent announcement that a cow in Washington state tested positive for bovine spongiform encephalopathy, or BSE, concerns them.

"I was very upset that lessons have not yet been learned," worried Sharon, Charlene's aunt.

Patrick said, "It's like being in England all over again, reliving this BSE thing and being told the meat is safe to eat. If ... we believe our government on meat safety, if we are told any differently, my daughter would not be lying here right now."

Charlene's father and aunt said they aren't against the beef industry, but they said they do worry that some other parent's child could fall victim to variant Creutzfeldt-Jakob disease.

"I am not giving up on my daughter, not for one moment," Patrick said. "I think if we've come this far, we can go further, and I hope one day and pray she'll walk off this bed. I have no doubt."

CNN's Miriam Falco contributed to this report.

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