Fulton (WSYR-TV) -- A young man in Fulton may be the oldest person in the world living the most severe type of spinal muscular atrophy who doesn’t need a ventilator. CV Abbott is 23 years old. Almost everyone else born with the same condition dies before age two.
Now, Abbott is talking about a new autobiography he’s trying to publish about what it’s like to beat the odds.
Abbott is used to surprising people by what he can do.
Doctors said he wouldn’t live past age three, let alone be able to rock out on his guitar.
The guitar he uses is a special edition. There are only thirty of them. CV says it's amazing that he's even rarer than his guitar.
His extremely rare condition has given him a strong will and he wants people to learn from his combative spirit through his autobiography titled “Classified Terminally Ill: A Young Man’s Story of Beating the Odds.”
“It's really a terminally ill survivor story, that's the best part because when you're terminal, you're terminal. Technically I still am terminal, I have been for 21 years. But I'm not going anywhere,” Abbott explained.
Abbott’s co-author is also beating the odds. Joe Abbate was told he would die of cancer two decades ago. He’s never given up on his health and won’t give up on publishing their book.
“There have been obstacles in our way, people say this is a long shot. Big deal. I mean, we're used to smashing long shots. We're just used to this and we'll never give up. This is going to be published,” Abbate said.
The book is supposed to make you laugh, cry and relate to Abbott as he grows up with a disease.
“I think people just don’t understand. They see me and they assume things and we just want to make it known, even Joe will tell you, I’m a regular guy. I just can’t move,” Abbott said.
CV Abbot will be at the CNY Arts Center in Fulton on Saturday and next Wednesday at 7 p.m. reading excerpts from his book and doing book signings.