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September 23, 2018

Fulton Man’s Life Story with ‘Death Sentence’ Illness Captured in Autobiography


By Janel Sullivan, Contributing Writer

Craig "CV" Abbott, who is living with the most severe type of Spinal Muscular Atrophy, may be the oldest living person with the degenerative disease who is not on a ventilator.  He says he loves heavy metal music and enjoys playing his guitar.  Photo by Janel Sullivan.

Craig “CV” Abbott, who is living with the most severe type of Spinal Muscular Atrophy, may be the oldest living person with the degenerative disease who is not on a ventilator. He says he loves heavy metal music and enjoys playing his guitar. Photo by Janel Sullivan.

Craig “CV” Abbott loves heavy metal. “The heavier the better for me,” he said. “Metallica is my all-time favorite band.” He loves to play guitar and hang out with his friends. He also has Spinal Muscular Atrophy Type 1, a disease that should have taken his life before he was two years old.

A diagnosis of SMA Type 1 is like a death sentence. There are no medications for it, and most children diagnosed die while still infants. Nearly all die before their second birthday.  Almost none graduate high school, as CV did.

He is remarkably healthy for his condition.

About two years ago, CV went to see experts at Ohio State University. “They originally didn’t think I had Spinal Muscular Atrophy because I’ve been so healthy, been so well.” After testing, his condition was not only confirmed, but “chances are I could be the oldest living person with this disease that’s not on a ventilator,” Abbott said. “That’s where the whole idea [for a book] spiraled from.”

Upon returning from Ohio, CV decided to share his story and started the rough draft of what would become Classified Terminally Ill: A Young Man’s Story of Beating the Odds. His co-author is Joe Abbate, himself a 25-year cancer survivor and a member of Abbott’s church, First United Methodist Church of Fulton.

Craig "CV" Abbott with Joe Abbate, a fellow member of Abbott's church and co-author of what Abbott calls his pre-ography, the story of his life with his disease.  Janel Sullivan photo.

Craig “CV” Abbott with Joe Abbate, a fellow member of Abbott’s church and co-author of what Abbott calls his pre-ography, the story of his life with his disease. Janel Sullivan photo.

The duo is currently working with what they call a “pre-ography.” It contains excerpts from the book to get future readers excited to learn the rest of the story. As they’re working on drafts of the book, and searching for publishers, CV and Joe are beginning to tour locally. CV will talk about his life with SMA Type 1, read excerpts from the book, and also have copies of the pre-ography available for purchase. They are appearing on 9WSYR’s Bridge Street on Monday, December 3 at 10:00 a.m. There is also an author spotlight featuring CV and Joe on Wednesday, December 12 at 7:00 p.m. at the CNY Arts Center in Fulton.

When attending a Classified Terminally Ill book talk, be prepared to be surprised. This book is not about “woe is me…it’s completely opposite. It’s really positive,” Abbate said. There are many humorous anecdotes in the tale right along with the gritty parts.

It’s a story of overcoming obstacles, ranging from the doubts surrounding his diagnosis, to being told he’d never be able to do the things he now loves. CV laughed as he remembered speaking to a secretary once who was shocked to hear his voice, “She stopped and said ‘I’ve never had anybody with SMA Type 1 call me before’.”

Craig "CV" Abbott's book, written with Joe Abbate, which details his inspiring story of living with a disease that kills nearly all of those who have it by age 2.

Craig “CV” Abbott’s book, written with Joe Abbate, which details his inspiring story of living with a disease that kills nearly all of those who have it by age 2.

The Abbott family has been a constant source of support throughout his life. CV’s mother was adamant that he be “mainstreamed” and attend public school and have a normal life. He went to the prom, graduated on time, and has been playing guitar for 8 years—even when battling bouts of pneumonia and undergoing an 11-hour surgery when in the 8th grade.

He’s lived portions of his life in public, serving as the face of a fundraising drive when he was young for an accessible playground.  The playground at Hulett Park was named for him,

CV’s number one nemesis, as he calls it, is pneumonia as it is a respiratory illness. When he was younger, he’d get it several times a year for six to eight weeks at a time. Part of the cause was scoliosis that was putting pressure on one of his lungs. The 11-hour surgery he endured was to place a metal rod in his back to alleviate this pressure.

During the writing of his book the authors conducted interviews with members of the Abbott family, as well as some of CV’s doctors and former teachers. Abbate said he learned the most from observing the day to day life at the Abbott household. There is a nurse there 24/7, and CV’s van is parked out front, which has also acted as an ambulance, “because ambulances can’t power my machines,” Abbott said.

Through all of this CV has had to act as his own doctor, because of the medical anomaly that is his life. “It’s so weird that I’m better,” he said, “because they don’t know why.”

Even though the book will focus on the obstacles CV’s faced in his life, in the end it’s about “how I got through them, and what I like to do now.” So, CV will be rocking out Metallica, Anthax and Pantera, watching his favorite action flicks with his friends, and teaching a guitar lesson or two. “And I do enjoy a really good book, if it’s about vampires,” he said, though “not Twilight.”

He and Abbate often joke about writing a sequel about their misadventures in writing over the past two years, and as CV continues to live his life doing the things he loves they’ll have plenty of material. “Some people have said ‘publishing is hard and you’ll never get this done’,” said Abbate. But both agree giving up is “never an option.”

CV wants to tell his story and is looking for venues to tell it. They’re hoping to book libraries, high schools, and even colleges to preview Classified Terminally Ill. The pre-ograpy is also available on Amazon.com. To keep up with CV or book him for a book-talk, check his website, http://craigvabbott.com, or email him ([email protected]) or Joe Abbate ([email protected]).

2 Responses “Fulton Man’s Life Story with ‘Death Sentence’ Illness Captured in Autobiography”

  1. Karen O'Neill
    December 3, 2012 at 8:41 am

    I remember you well as a child CV !! We lived 2 houses down from your grandparents on N.8th street here in Fulton.I am sure you remember Amber,Crissy & Bobby going on walks with you and your nurses.So very happy to hear you are doing so well.Take care & God Bless !!

  2. Curtis Davis
    December 3, 2012 at 6:14 pm

    CV,

    Way to go! Your story will be very inspiring. My son was also diagnosed with SMA Type 1 at 2 months old. His was so advanced, they gave him 4 months to live. He was immediately put on hospice and sent home. That was 14 months ago. We haven’t been to the doctor since. He is the happiest person I know. He is starting to speak, eats on his own and has a bi-pap at night. I would like to read him your story once he is a little older!

    Cheers,

    Curtis Davis

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