At the age of 49, Anthony Raia, a Commack resident and father of four, died from Amyotrophic Lateral Sclerosis, a progressively debilitating disease that affects the muscles in the body. He was diagnosed in 1999 and fought a six year battle. All along, his wife Rosa, was his primary caregiver.
“He was a devoted and loving husband; and a caring and dedicated father to his five young children ranging in age from 4 to 14 years old,” his daughter Christina wrote in a letter recently explaining why she’s involved in the fight against ALS. “He always did his best to ensure that our family had everything we needed and wanted. His diagnosis forever changed our lives.”
Since her father was diagnosed with the disease – also known as Lou Gehrig’s Disease after the Yankee legend who also died of ALS in 1941 – Raia had captained a team in the Walk to Defeat ALS held annually on Long Island.
The Commack High School graduate formed "Team Raia" with her dad, mother and sibblings. They’ve been involved with the Long Island Walk to Defeat ALS since the first one was held at Jones Beach in 2001. Raia said that her father was instrumental in helping to form their team that first year.
In that time "Team Raia" has raised $220,000.
The funds from the Long Island Walk to Defeats ALS go to provide patient services and research to find a cure through The ALS Association Greater New York Chapter. The chapter also funds an ALS clinic at Stony Brook Hospital for patients on Long Island and holds monthly support groups.
Raia’s team continues to walk for the cause. On Sept. 29 at Eisenhower Park in East Meadow "Team Raia" walked for the 12th year in a row. This year they have raised over $13,000 and are looking to continue to add to that number until the end of December in memory of Anthony Raia who died from the disease in 2005.
Raia recalled how ALS robbed her father of his ability to walk, talk, and even breathe.
“As the disease progressed, he became completely paralyzed,” she said. “Trapped inside his own body.”
He communicated with his family using a special computer that would say what he typed out by using small movements of his finger. Eventually, when he couldn’t even do that, he used equipment to track his eye on a computer screen to speak for him.
“This is how my dad was forced to communicate with us, his wife, and the rest of his family, caregivers, and friends,” Raia said. “Just saying ‘I love you’ was an overwhelming task.”
Her father’s last trip outside of his home was to attend her graduation from Commack High School in 2003.
“I don't think I could imagine what it would have been like to not have him there,” Raia said.
Editor's Note: The author of this article is a volunteer at The ALS Association Greater New York Chapter, a former employee and frequently works with the organization to help improve its online presence.