Tony Gibson, a father of four, has died less than a year after being diagnosed with what doctors call the human form of mad cow disease

By Char Adams
February 05, 2019 02:26 PM
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A Tennessee father of four has died less than a year after being diagnosed with what doctors call the human form of mad cow disease.

Tony Gibson, 33, died at an assisted living facility near his family’s Nashville home on January 30. Over the last year, Gibson’s health rapidly declined after he was diagnosed with Creutzfeldt-Jakob Disease (CJD) last March.

In his final days, he was unable to walk, talk or communicate. On the day that he died, he was unable to eat and doctors struggled to find his weak pulse. His wife, Danielle Gibson, 31, and his family were by his side.

“He held out the whole day up until almost midnight. He is the strongest,” Danielle tells PEOPLE. “When he was struggling for his last breath, I was so heartbroken. I feel an empty hole. Everything reminds me of him. Every time I look at our babies I think about how they’ll never know him.”

Just one day before Tony’s death, Danielle sang him a sweet song in a Facebook video that has been viewed more than 3,000 times.

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Life was normal for the Gibsons and their four children — two sets of twins aged 11 and 2 — up until the end of 2017. Almost abruptly, Tony began to lose his memory and would get lost doing normal tasks like going to the grocery store or doctor’s check-ups.

“I wondered, ‘What is causing this man to be like this?’ I took care of him, but his decline was so rapid,” Danielle previously told PEOPLE. “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.”

The Tennessee couple consulted local doctors who thought Tony may have dementia. But when he developed paranoia and began hallucinating, Danielle knew she needed to do more. She took him to Vanderbilt University Medical Center where, after about a month of testing, doctors diagnosed Tony with the CJD — which doctors have called the human form of mad cow disease.

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They do not know how he contracted it.

“I have never been so devastated,” Danielle told PEOPLE just weeks before Tony’s death. “I couldn’t believe it. I never expected something like this, never even heard of it. They gave him a maximum of six months to a year.”

Creutzfeldt-Jakob Disease (CJD) is a rare, fatal brain disorder that affects about 320 people in the United States each year. Although certain treatments can help support patients with CJD), nothing has been proven to stop its progression, according to the Centers for Disease Control and Prevention. The “disease is rapidly progressive and always fatal,” according to the CDC.

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Danielle said doctors gave Tony steroids as part of his treatment, but his condition has only gotten worse. He was moved into an assisted living facility. With that, Danielle and the couple’s children were left to visit him at the facility several times a week.

Now, the mom of four says that although she knew Tony would die, she is still struggling to come to terms with the death.

“It’s all sinking in. He loved our kids so much. It’s terrible. I feel such a lump in my throat, and its surreal, him not being here anymore. I’m gonna miss him playing with our babies. He was a great dad. He was our protector. I never felt scared. I’m gonna miss hearing him say, ‘I love you.’ ”

Danielle has set up a GoFundMe page to help cover medical expenses.