Marc Alessi will always remember his father laughing.
“There was not a night when my dad didn’t crack a joke,” the Liverpool High School junior said. “My dad was a hilarious person and loved comedy. One of the most important and recent memories with my dad was watching Kung Fu Panda. We both loved that movie so much and every time it was on we would be watching it. We always loved to joke about the characters and the plot line, and it was just hilarious.”
Marc’s father, Dave, passed away from a rare degenerative disease called spinocerebellar ataxia type 2 on Oct. 4, 2011. In his honor and to raise awareness about the illness that claimed him, Marc has organized the Walk for Dave, which will take place from 8 a.m. to noon Saturday, May 25, at the LHS track.
“People can show up anytime between 8 a.m. and noon,” Marc said. “There is just one flat rate of $10 per person or $25 per family. People will be able to walk the track as much as they like; they could also run if they want to.”
There will be food at the concession stand, face painting and music by DJ Brian Schmidt.
The walk was originally a project for Marc’s health class; he and partner Leah Dixon had the option to write a paper, design and present a slide show or organize a volunteer project.
“I suggested we do our own walk,” Marc said. “It really took off from there. Leah and I were coming up with so many ideas and I knew it would be a success from then on out.”
“It started out as a project, but then I realized how much it meant to Marc that we were doing this for his father,” Dixon said. “So we both began to take it a lot more seriously.”
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.”
He may be gone, but Dave Alessi instilled in his family a sense of determination and the will to fight.
“I am so involved in school, music, and other activities because of my dad,” Marc said. “He was such an inspiration. Can you imagine a bunch of doctors telling you [that] you only have five to 10 years to live and yet survive to 13? He pushed through ataxia; he did not give up without a fight. That is what I respect my dad most for and that is what he left behind in me.”
But Marc takes comfort in the idea that he’s doing his dad proud.
“Honestly, my dad would love the walk. I can picture him sitting at the entrance of the stadium greeting all of the guests and cracking some kind of lame joke that always makes people laugh,” he said. “My dad would be so happy to find that so many people care about the disease and hope to one day find a cure.”
Sarah Hall is the editor of the Eagle Star-Review and the Baldwinsville Messenger. The 2012 winner of the Syracuse Press Club’s Selwyn Kershaw Professional Standards Award, she has been with Eagle Newspapers since 2006. She is a Liverpool native.