A Tennessee father-of-four has died just eight months after contracting the so-called ‘human form of mad cow disease’.
Tony Gibson, 33, passed away at a nursing home in Hendersonville on January 30, with his wife Danielle, 31, and two sets of twin girls, ages 11 and two.
Last year, doctors told Tony he had developed a degenerative brain disease caused by the same infectious proteins that trigger the infamous ‘mad cow disease’ in animals and that he wouldn’t survive more than a year.
Danielle told DailyMail.com that in the final two months of her husband’s life, he was struggling to walk, talk and even eat.
Three days before her husband died, Danielle is seen singing Tony’s favorite hymn Amazing Grace to him in Facebook video that has garnered more than 5,800 views.
Tony Gibson, 33 (pictured, December 24), from Lebanon, Tennessee, died just eight months after contracting a the so-called human form of mad cow disease
In December 2017, Tony noticed a decline in his cognitive skills. He and his wife Danielle visited Vanderbilt University Medical Center in Nashville four months after symptoms appeared in hopes of learning answers. Pictured: Tony with his daughters, left and right
‘He was having trouble swallowing in the last week. It got to where he would refuse anything and shake his head: “No”,’ Danielle said.
‘The doctors told me it was just the process of the body shutting down. It was so hard to see because Tony is so strong; he’s such a big guy.’
Danielle told DailyMail.com last year that, in December 2017, Tony, an iron worker, started forgetting how to get around his home.
‘He would say: “I’m going to the bathroom” and I would say: “That’s not the bathroom”,’ she said.
‘So I started labeling every room in the house. And that lasted about a month until he couldn’t read anymore.’
Tony’s condition started to deteriorate even more. He would go to the neighbor’s home to take care of the ‘his dog’ – even though he and Danielle don’t have a dog.
He would lie in bed with Danielle and tell her he wanted to have kids with her – even though they were raising four children together.
It got so bad that he would get lost while running errands, so Danielle didn’t let him drive anymore.
The couple traveled to Vanderbilt University Medical Center in Nashville from their home in Lebanon four months after the symptoms started, and Danielle was convinced he was suffering from dementia.
After a month of tests, Tony (pictured, with his wife, Danielle) was diagnosed with Creutzfeldt-Jakob disease
CJD is a rare, degenerative brain disorder that is caused by coming into contact with tissue that has been infected, such as eating contaminated meat. Pictured: Tony and his wife Danielle
Danielle says she doesn’t know how her husband contracted CJD and doctors say he is one of the youngest patients they’ve ever seen. Pictured: Tony, left, and Danielle before his diagnosis
WHAT IS CREUTZFELDT-JAKOB DISEASE?
Creutzfeldt-Jakob disease (CJD) is a rare, degenerative brain disorder.
It is caused by abnormal proteins known as prions.
Prions are normally harmless but, when misshapen, they become infectious and create lesions,
Sufferers contract CJD by coming into contact with tissue that has been infected, such as eating contaminated meat.
About one in a million people worldwide become infected, with just 350 annual cases occurring in the US.
Symptoms, which worsen rapidly over time, include:
- Loss of intellect and memory
- Personality changes
- Loss of balance and coordination
- Slurred speech
- Vision problems and blindness
- Abnormal jerky movements
- Loss of mobility
Most sufferers die within a year of symptom onset, usually due to an infection caused by immobility.
There is no cure.
Treatment focuses of relieving symptoms and making sufferers comfortable via painkillers and antidepressants.
In May 2018, after a month of tests, neurologists delivered a much different diagnosis: Creutzfeldt-Jakob disease (CJD).
CJD is a rare, degenerative brain disorder that is caused by coming into contact with tissue that has been infected, such as eating contaminated meat.
Danielle says she doesn’t know how her husband contracted CJD and doctors say he is one of the youngest patients they’ve ever seen.
It is caused due to abnormal versions of a protein known as prion. Prions are normally harmless but, when misshapen, they become infectious and create lesions, according to the Mayo Clinic.
CJD cannot be transmitted in the air or through sexual contact.
Symptoms include depression, anxiety, memory loss, personality changes, impaired thinking, difficulty swallowing and difficulty speaking.
The mental deterioration is rapid, usually occurring within a few months. Many sufferers lapse into coma.
According to the Centers for Disease Control and Prevention, CJD risk rapidly increases after age 50.
Usually symptoms begin to appear around age 60 and approximately 70 percent of sufferers die within a year.
There is no treatment or cure for CJD. Treatment plans currently involve lessening the severity of symptoms and making those affected comfortable.
CJD occurs in three forms. One is sporadic with no known causes, which accounts for 85 percent of cases, according to the National Institutes of Health.
This is the type that doctors believe Tony developed.
Another form is hereditary. Those with a family history of the disease and have a genetic mutation account for 10 to 15 percent of US cases.
The rarest form is acquired CJD, which is when the brain or nervous system tissue becomes infected through exposure – only causing one percent of cases.
Danielle said in the final two months of Tony’s life, he was struggling to walk, talk and even eat. Doctors explained to her it was the process of the body shutting down. Pictured: Tony with Danielle, left, and with his daughters, right
After Tony passed, Danielle donated his brain to the CJD Foundation, which she hopes will help doctors find a cure or at least some form of treatment. Pictured: Tony with Danielle and their four daughters
A type of CJD called variant CJD (vCJD) can occur from eating infected beef. First described in 1996 in the UK, this beef is already infected with a disease that is similar called bovine spongiform encephalopathy, or ‘mad cow disease’.
About one in a million people around the world become infected, with just 350 cases occurring annually in the US.
Danielle said that when Tony was diagnosed, doctors told her that he had one year to live in the best case scenario.
However, he required round-the-clock care so he was placed in a nursing home in Hendersonville where his condition rapidly deteriorated.
Danielle said that despite knowing Tony did not have long to live, she is still struggling to accept the fact that he passed away.
‘The hospice nurse tried to tell me it would get worse after he passed,’ she said.
‘I told her that I thought it wasn’t the case because for the past year I felt he was already gone. But she was right; you can’t prepare yourself for this.
‘Everything reminds me of him, every time I look at our babies, it’s so hard.’
After Tony passed, Danielle donated his brain to the CJD Foundation, which she hopes will help doctors find a cure or at least some form of treatment.
The family has created a GoFundMe page to cover the cost of Tony’s medical bills and provide financial relief for his wife and children.
So far, more than $7,700 has been raised out of a $10,000 goal.