On Jan. 30, Danielle Gibson held her dying husband’s hands and softly sang the words to his favorite hymn, “Amazing Grace.”
Tennesee father-of-four Tony Gibson, 33, could no longer speak, communicate, or move, but Danielle watched as her confused, agitated husband instantly relaxed at the sound of the music.
“I knew he was in there,” she said. “That’s his favorite hymn.”
Danielle and Tony once lived a fairly typical life, raising their two sets of twin girls, ages 11 and 2.
But in late 2017, Tony’s behavior took a scary, confusing turn south.
It started with short-term memory loss, Danielle told sources. Tony would forget where he was going or get lost while running routine, everyday errands like going to the grocery store.
Danielle remembered a night when Tony didn’t come home. The police found him wandering around the Nashville airport, trying to remember where he had parked his car.
“I wondered, ‘What is causing this man to be like this?’ I took care of him, but his decline was so rapid,” Danielle said.
“Each week it would get dramatically worse. I had to label our bedrooms, bathrooms in our home. It got to a point where it was like a psychosis. It was unreal. It was scary.”
Countless doctor visits eventually led the couple to Vanderbilt University Medical Center in Tennessee where Tony was given the diagnosis of Creutzfeldt-Jakob disease.
The rare, degenerative disease causes the brain to deteriorate very quickly, and is 100 percent fatal. Doctors refer to the disease as the human cousin of mad cow disease.
Tony’s family still doesn’t know how he was exposed to the disease, but they were told it could have come from bad meat, could be genetic, or it could be from an unknown source.
Danielle and her kids were forced to watch Tony suffer a heartbreaking road. He lost his ability to read and write, use his arms and legs, and eventually could not speak.
“It was a very rapid decline,” Danielle said. “It’s just terrible. If I try to sort it out in my head, I would lose my mind.”
Tony died on Jan. 30, leaving Danielle to raise their four children on her own. She has started a GoFundMe campaign to raise money for her family’s urgent and ongoing needs.
She hopes that by sharing her story, people will be made aware of CJD and work towards a definite cure.
“Our hearts are broken,” Danielle shared, “but we take comfort in knowing this fight is over.”
