As an infant, Craig Abbott was diagnosed with Type 1 Spinal Muscular Atrophy (SMA) and given less than two years to live. On Wednesday, he came to Binghamton University to speak about dealing with the disorder for the past 21 years.
Binghamton University’s Neuroscience Club hosted Abbott, co-author of the book “Classified Terminally Ill: A Young Man’s Story of Beating the Odds.”
Abbott was diagnosed with Type 1 SMA as an infant, it is the number one killer of children under the age of 2.
“In the game of life, some people are born with two strikes against them. I was born with three. Game over,” Abbott said. “Well, just call me the game-changer, because I plan to shake things up a bit.”
Despite suffering from SMA, Abbott went on to school and graduated on schedule. He performed in his church choir, sang the national anthem at Syracuse baseball games and invented his own method for tuning and playing the guitar: laying it atop a stack of pillows and sliding his fingers along the fret board.
SMA is a motor neuron disease that affects the voluntary muscles used for activities like crawling, walking, head and neck control and swallowing, Abbott said. Infants diagnosed with Type 1 SMA generally do not live past two years of age without the help of a ventilator and g-tube.
“Craig is the only [SMA] Type 1 I have ever seen in the world that is not on a machine, and, of course, defying the odds even past that,” said Sierra Kulas, a mother of two children living with SMA and a contributing speaker.
Long time family friend Joseph Abbate Jr., co-authored the book with Abbott.
“We think it applies to anybody that has ever had a serious disease and has had to fight, against all odds, to survive,” Abbate said about the biography.
There is no known cure for SMA, but a series of experimental treatments are emerging. Albuterol, a drug used for the relief of bronchospasms, a sudden constriction of air passageways, is well-known for its help in patients with asthma, and, now, as a developing option in SMA therapy.
“He knows his body, he knows what he needs, like the albuterol, which you’re not supposed to do, but it was a success,” Abbate said. “He took three times the recommended FDA amount and he is getting stronger every day.”
In Abbott’s childhood, his parents even tried using inversion therapy — having him sleep upside down — in an attempt to prevent pneumonia from settling. Abbott has been treated for pneumonia, a sickness very common and deadly to SMA patients, hundreds of times.
“Not doing anything when diagnosed with a terminal illness is a self-fulfilling prophecy,” Kulas said. “Of course you should try anything.”
The Neuroscience Club put the event together to both educate the public and tell the stories of those living with SMA.
“Our aim was not only to educate the public about spinal muscular atrophy, but also to spread the message of those afflicted,” Steven Lange, president of the neuroscience club and a senior majoring in English, wrote in an email. “The breadth of medical knowledge and depth of personal stories deserve attention, and as such, the genetics of SMA are as riveting as the individual experiences of those suffering from the disease.”
Organizations like Families of SMA call for increased support for research and clinical trials, but Lange said that SMA patients need all the support they can get.
“It is undeniable that university students are historically critical in the dissemination of new knowledge and in encouraging public involvement,” Lange wrote. “The Neuroscience Club hopes to contribute in raising such awareness in the Southern Tier; we have been big proponents of brain awareness in the past, so this is another opportunity for us to help the community appreciate neuroscience and its very real implications.”