At 24, she has a degree in business management, but is as helpless as a newborn, requiring round-the-clock care at her parents' home in Miramar.
"There is nothing worse," her father, Patrick, said of the diagnosis. "It was a gut-wrenching feeling, devastation." He asked that the family's last name not be published to protect their privacy.
At a news conference Friday, he said he was "horrified" that the disease was discovered in a single cow in the United States last month, raising fears about the safety of the food supply.
His daughter contracted variant Creutzfeldt-Jakob disease while living in Great Britain. The brain-wasting illness is the human form of bovine spongiform encephalopathy -- the official name of mad cow disease. It was first discovered in Britain in 1986, and jumped from cows to humans who ate the infected beef.
He expressed anger at the British government for maintaining a public stance that the beef supply was safe to eat, knowing that there was a problem, he said.
"The U.K. government assured us the meat was safe to eat and we fed the kids meat," he said. "If we had known any different, my daughter would not be in this position today."
He worries about Charlene's older brother and younger sister. "They all ate the same thing," he said.
"I hope this case in the United States will bring about an awareness of what must be done to keep the food supply safe," he said.
Another form of Creutzfeld-Jakob, which strikes about one person in a million each year, has been known for years and usually affects people in their 60s or older. But the human variant that struck Charlene is so new and so rare -- fewer than 150 cases worldwide -- that scientists have not figured out why it affects some people and not others. They also don't know how the infective agent, called a prion, establishes itself in the brain, or why the incubation period seems to range from five to 15 or 20 years.
And they don't know how to stop it once it gets into the body.
Dr. Richard Neubauer, an internist who heads Ocean Hyperbaric Center in Lauderdale-by-the-Sea, is attempting to treat Charlene by exposing her to pressurized oxygen three times a week.
He said he learned about her case through news reports and contacted the family, telling them that he treats rare neurological diseases. He invited them for a consultation. Since then, she has been transported regularly to the center and placed in a pressurized chamber for an hour of oxygen therapy -- almost 200 treatments over the past 15 months.
Dr. Walter Bradley, chairman of the neurology department at the University of Miami School of Medicine, said scientists are working on treatments for the disease, but they are in only the early stages of research.
"Unfortunately, at the moment, there is no known treatment, and there is no scientific evidence that [hyperbaric oxygen] is of any benefit in these neurological diseases," Bradley said.
Neubauer and Charlene's father met with reporters Friday to discuss her case. Both said she has improved and has outlived experts' predictions.
According to the World Health Organization, the median duration of the illness from onset to death is 14 months, but some patients live three or four years.
Neubauer characterized her care as an attempt to treat a disease for which there is no treatment.
"Did we stop the prions? We really don't know. We don't want this to [be publicized] as a cure. It's no panacea," Neubauer said. "We thought if it did no more than stop the deterioration, that would be something. What we've done, what we've accomplished, we don't know."
Neither Neubauer nor the family would discuss the costs of the treatment.
Charlene, dressed in a running suit and running shoes, sat in a wheelchair at her father's side, unresponsive.
"She has improved since she started the treatments," said her father, a native of Jamaica, who lived with his wife and three children in Great Britain until 11 years ago, when they moved to South Florida "to seek a better life for my children."
He said she has gained at least 10 pounds, and is more responsive to touch and to voices.
"I have no doubt she will recover," he said.

(source) Sun Sentinel (Nancy McVicar) 1-10-04