In December 2017, Tony Gibson’s life was disrupted forever after he began experiencing rapid memory loss out of nowhere.
Tony and his wife Danielle tried to get a medical diagnosis for his terrifying condition for months. The couple from Lebanon, Tennessee was left to deal with the uncertainty as Danielle wrote on a GoFundMe page that “He would get so confused I would have to label the rooms in our home.”
It wasn’t until months later that doctors at Vanderbilt University Medical Center in Nashville could give them an answer. Tony was diagnosed with Creutzfeldt-Jakob Disease (or CJD), sometimes called the human form of mad cow disease (though that’s just because it’s classified in the same category of transmissible spongiform encephalopathies, or prion, diseases).
The diagnosis was an answer, but certainly not one that would bring them any comfort.
CJD is a rare, degenerative, and fatal brain disorder which runs a rapid and devastating course before killing its victim. There are only about 350 cases each year in the U.S., and it’s typically found in people twice Tony’s age.
Tony’s disease progressed and ended like it would for so many. He lost his job because he couldn’t perform simple tasks. He had no life insurance and would leave his family quickly and without the resources, Danielle would need to help raise her twin girls. (Tony has two sets of twin girls, but it’s unclear if he and Danielle were caring for all four children.)
Recently, Danielle posted a video of her girls’ last Christmas with their father as he lay in his bed at a care facility.
The couple started the GoFundMe page in December and raised over $22,000, which was over twice their goal. However, Tony passed away just a few months after they made their initial post.
Along with the announcement, Danielle posted a video of some of his final moments. She sang “Amazing Grace” to her husband as he lay in his hospital bed taking his last breaths. It’s hard to watch, but Danielle’s love for her husband – not to mention her beautiful voice – are something to behold.
There are moments when Tony looks perfectly at peace or is staring deeply into his wife’s eyes.
Tony was only 33 years old when he passed away. Danielle’s Facebook page shows the devastating toll the disease took on her husband. Before getting sick, Tony was a tall and muscular man supporting the 5 women in his life.
Photos from just months after the disease began to manifest already show him unable to move around well by himself or focus properly, though he is still surrounded by a loving family.
Unfortunately, there is no cure for CJS and there’s usually no way to know if a person got it from coming into contact with an infected specimen or if it was transmitted genetically unless rigorous testing is done after death. But the disease cannot be transmitted from person to person.
Now that Tony is gone, Danielle says she’s relieved he’s no longer suffering:
“Tony has always been so strong. He fought a damn good fight. Our hearts are broken but we take comfort in knowing this fight is over.”
You can see Danielle sing Tony’s favorite hymn, “Amazing Grace” in the video below.
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