Dad With Human Form of Mad Cow Disease Dies, Wife Vows to Educate: 'People Need to Know About This'

When Danielle Gibson sang "Amazing Grace," a vestige of her husband came back to her.

When Danielle Gibson sang "Amazing Grace," the soul of her ravaged husband, just for a moment, glimmered in his eyes, she said.

"I knew he was in there," she told "That's his favorite hymn." But in every other moment, Tony Gibson had all but left this world, she said. "He lost his voice. He lost his movement. He lost everything," she said, tears welling in her own eyes.

In less than a year from his diagnosis, Tony died in a nursing facility from the human form of mad cow disease, according to his wife. 

Creutzfeldt-Jakob disease (CJD) came on like a freight train from some freak station, Danielle said. The 33-year-old machinist and father of four was healthy and happy, and then, seemingly overnight, he began losing parts of himself, she said. His memory went first. Then his ability to read. Then his arms and legs.

"It was a very rapid decline," his widow said. "It's just terrible. If I try to sort it out in my head, I would lose my mind."

The couple saw a slew of neurosurgeons before doctors at Vanderbilt University Medical Center in Tennessee could put a name to what was killing Tony. The rare affliction has no cure, and the Gibsons were told the end would come quickly, according to Danielle. 

Nonetheless, Tony lasted a year.

A spokesman for Vanderbilt said the hospital could not discuss Gibson's diagnosis but confirmed they had given Danielle consent to talk about the hospital and his treatment there.

"We'd never heard of this," Danielle said. They were told it could have come from bad meat, or it could be genetic, or, as in most cases, the source was unknown. The latter applied to Tony's case, Danielle said.

Her husband's descent began when he came home from work one day saying he had been hit in the head, according to Danielle. But he couldn't explain how it had happened and his wife doesn't know if it happened at all. Or if it did, she said, it was just coincidental. Then he began to lose his short-term memory and suffered bad headaches, she said.

One night he didn't come home, she said. The police called to say he had been found wandering around the Nashville airport and didn't know where he had parked his car. 

His personality changed, she said. He went from being happy-go-lucky to irritable.

The change was so pronounced, Danielle said she wondered if he had suddenly become bipolar. She wondered if he had dementia. She worried he had brain cancer.

"It got so bad I had to label the rooms in our house," she said. He couldn't sign his name as they filled out forms while traipsing through the offices of brain doctors. He lost his ability to read. 

In March, as a last resort, they went to Vanderbilt in Nashville. They kept Tony for a month while they ran a battery of tests and ultimately determined he had CJD, according to Danielle.

The disease is a rare, degenerative brain disorder that affects about 350 people a year in the United States. "Unfortunately, it is 100 percent fatal and there is no treatment," said Dr. Brian Appleby, a CJD specialist and director of the National Prion Disease Pathology Surveillance Center.

Danielle said she wanted to get Tony out of the hospital so he could be more comfortable, but she couldn't give him around-the-clock care and raise their two sets of twin girls, ages 11 and 2. She transferred him to an assisted living facility, where he was visited constantly and received excellent care, Danielle said.

On Jan. 30, Tony died. He was unable to do much of anything at the end, Danielle said. In his confused state, he sometimes became agitated. But when she sang "Amazing Grace" to him, he would quiet down. 

"He loves music," she said. When he was a kid, he told her, "he'd rather have the radio on than the TV."

Now, Danielle hopes people will listen to her as she tries to spread the word about CJD. Though she is in the throes of grief, she is speaking publicly about the disease that rolled in and stole her husband. She has established a GoFundMe account to help with his medical bills. 

"This is important," she said. "I want people to know."