In September 2001, our family formed Team Raia and participated in the first-ever Long Island Walk to Defeat ALS. Team Raia has participated in the Walk to Defeat ALS every year since, and 2020 would have been our 20th Walk. To date, Team Raia has raised over $320,000 for ALS research and patient services.
How ALS Changed Our Lives
Our family has been involved in the fight against ALS for the past 20 years. In January 1999, my dad, Anthony Raia, was diagnosed with ALS. At the time, he was 43 years old. He was a devoted and loving husband; and a caring and dedicated father to his 5 young children - ranging in age from 4 to 14 years old. He always did his best to ensure that our family had everything we needed and wanted. His diagnosis forever changed our lives.
During my dad's 6 year battle with ALS, my mom, Rosa, was his primary caregiver. She took care of him 24/7. My brothers and I watched as the father that once played catch with us in the backyard, taught us how to ride a bike, and helped us with our homework, began to lose his ability to do all of those things. At the beginning he was able to make it to a few of my brother's baseball and basketball games - sports were a big thing in our family. His last trip out of the house was to attend my high school graduation - and I couldn't imagine not having him there.
As the disease progressed, my dad slowly lost his ability to walk, talk and even breathe. After only the first year, he needed a ventilator to help him breathe. He eventually became completely paralyzed - trapped inside his own body. He could no longer speak to us, and the only way he could communicate was through a specialized computer that would speak what he would type. Eventually, not being able to move his fingers enough to click the computer mouse, he used a sensor attached to his eyeglasses which read his eye movements. Just saying "I love you" was an overwhelming task.
On February 4, 2005, my dad lost his battle with ALS. He has missed so many milestones - seeing all of his children graduate college and me completing my MBA; his son getting married; the birth of his first gradchild; and growing old with his wife like they planned when they got married.
Together, we can make a difference in the lives of those affected by ALS. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find a treatment and a cure.