continued So, with the full support of the LHS staff and administration, as well as Marc’s family, the walk was planned.
The major purpose of the walk is to raise awareness about ataxia. According to the National Ataxia Foundation, the word “ataxia” means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. The word ataxia is often used to describe a lack of coordination which can be associated with infections, injuries, other diseases or degenerative changes in the central nervous system. Ataxia is also used to denote a group of specific degenerative diseases of the nervous system called the hereditary and sporadic ataxias.
Dave Alessi was diagnosed in 1998 when Marc was 2. In his case, the condition was genetic, meaning Marc and his two brothers, Michael, a freshman at SUNY Alfred, and Alex, a sophomore at LHS, have a 50 percent chance of developing the disease.
At the time of his diagnosis, Dave Alessi was given less than a decade to live. But he refused to let the disease slow him down. By 2005, doctors said he’d be confined to a wheelchair, but Alessi continued to walk the track at Gold’s Gym every day. And he never missed one of his sons’ events or games.
“He was the most supportive person you could possibly ask for,” Marc said. “Every single concert I had, he was there, every single swim meet I had, he was there, every other event I was involved in, he was there. I miss the times when I could look up and see my dad smiling, so proud of me. And really it was things like that that kept me going through my childhood. I never realized what I had until he was gone.”