January 2, 2004 CNN

Meat from cattle with mad cow disease has been linked to a brain- wasting illness in humans. The only confirmed case in the United States involves a woman believed to have contracted the diseases in Britain. We last reported on her case a year ago.

Now CNN medical correspondent Holly Firfer has an update.

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HOLLY FIRFER, CNN MEDICAL CORRESPONDENT (voice-over): This young woman should be finishing up her master's degree or planning her future. Instead, she's become a statistic; 24-year-old Charlene -- her parents don't want us to use their last name -- is the only person living in the United States suffering from the human form of mad cow disease.

This is what Charlene looked like when CNN brought you these exclusive pictures over a year ago. Then, doctors told her parents she had just about three months to live.

UNIDENTIFIED FEMALE: Yes. Come on.

FIRFER: And yet, Charlene is still alive today.

PATRICK: She has stabilized from the last time we saw you. If you remember that, they gave her three months at that time. And it's over 15 months now thereabouts, something like that. And she's still here. And she has not deteriorated. Mostly, she's stable.

FIRFER: Doctors at the Centers for Disease Control and Prevention are sure Charlene contracted the disease in the United Kingdom, not in the United States.

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

So is it remarkable that Charlene still is living? Well, it is hard to tell. But U.S. and British health officials declined to comment on camera about Charlene's condition, citing patient confidentiality. But a statement from the British Health Department illustrates how much is still unknown about the VCJD.

"It remains the case that there is still much that we do not know about VCJD, for example, the route of infection, the incubation period, the level of exposure required to cause the disease, and the possible role of genetics susceptibility. It is likely to be some years before we are able to make soundly based predictions about the future course of the disease"; 21st century medicine has found no cure yet, but Charlene's family will not give up.

They bathe and feed her, care for her around the clock. One infectious disease expert who sees Charlene every few month says she's shown some improvement because her mother has been meticulous in caring for her daughter.

PATRICK: How Charlene's mom does it, I don't know. And we don't know. I'm amazed every day. It is tough on her, really, to be in this room every day with our daughter, because you can't leave, because sometimes she might need help breathing. And she'll be sitting here every day 24/7.

FIRFER: A neurologist who saw our original report on Charlene's condition was willing to try something new. He offered to give Charlene hyperbaric treatment, pumping pure oxygen into her lungs, which may help the brain function better. So, three times a week, her family brings her here to a hyperbaric treatment center in Fort Lauderdale.

UNIDENTIFIED MALE: When she first came in, was virtually comatose, nonreactive, could not obey commands, did nothing.

FIRFER: Dr. Neubauer (ph) says this is no miracle treatment. But since hyperbaric treatment has alleviated other disorders, he felt it was worth a try with Charlene. Has it helped?

UNIDENTIFIED MALE: And after 192 treatments, she's not only alive, but she's beginning to try to talk. She's -- follow simple commands. Still a long ways to go.

PATRICK: Well, she has put weight on. She looks brighter. She moves around a lot more. She murmurs a lot more. So, yes, I would say that, in her, there is some physical difference.

FIRFER: So what was the family's reaction to the announcement by U.S. officials that a cow in Washington state had tested positive for mad cow disease and that it's still safe to eat beef?

UNIDENTIFIED FEMALE: I was very upset. I was very upset. I was very upset that the lessons have not yet been learned.

PATRICK: It's like being in England all over again, reliving this BSE thing, and being told that the meat is safe to eat. We believed our government that the meat is safe to eat. If we were told any differently, my daughter would not be lying here right now.

FIRFER: Both Charlene's father and aunt say they are not against the beef industry, but they do worry that another parent's child could fall victim to VCJD.

PATRICK: I'm not giving up on my daughter, not for one moment. I think, if we've come this far, we can go further. I hope one day, still -- hope and pray that one day, she will walk from this bed. I have no doubt.

FIRFER: Holly Firfer, CNN, Atlanta.