Why is the Walk to Defeat ALS so important to patients, caregivers, friends, and family?
Even more than the sense of community, love, and friendship on Walk Day, your support of the Long Island Walk to Defeat ALS provides much needed care and equipment to patients as well as advancing research for treatment and a cure for this devastating disease. Each of our Walk Teams have their own unique stories about why they Walk each year. We’d like to share one of those stories with you about Team J.A.C.K. who Walk in memory of Chris Risotto.
One of my most treasured photos and memories is our visit to see Santa two years ago. It was the first time the kids even talked to him, they’d been afraid to prior. They would only take a picture with him if Chris and I were in it too. We had no idea our first Santa photo would also be our last Christmas with Chris.
In January, Chris started feeling weakness in his left thumb. At first, the doctors thought he had an injury…but as the weakness spread throughout his left hand, and then to his right, we knew it was something else. It wasn’t until June that our worst fears were confirmed with a diagnosis of ALS. On the way home from that appointment, we heard ‘Fight Song’ by Rachel Platten on the radio. We both vowed to stay positive and fight no matter what came our way, to find a way for Chris to live with ALS as long as possible, for him see our children grow up and be together as long as we could.
As the summer went on, Chris got weaker. Unlike many with ALS, Chris could walk, but he couldn’t hug our children, couldn’t feed himself, couldn’t shower or get dressed without help. Chris was the best man in his brother’s wedding in July, but couldn’t speak well enough to give the toast that he’d started working on in the spring. The disease was attacking him in the worst way, and there was nothing we could do to stop it.
We took a family trip upstate in August, to my parent’s lakefront property that we all loved. We got Chris into the new pontoon boat for a ride around the lake; it was the happiest I’d seen him in weeks. We took a family selfie, our smiles of pure joy brighter than the sun shining in the background.
Chris was called Home on August 29, 2015, after a brutal battle with ALS that lasted only eight months. He fought as long and hard as he could, in the end making the ultimate sacrifice, choosing our lives over his so that our young children remember the loving, playful, fun daddy that he was. Strength, courage, and devotion to his family, just a few of the reasons Chris was such an amazing husband, father, son, brother, and friend.
Chris’ fight is over, but mine is not. I vowed to stay positive and fight no matter what happened. I can no longer fight for Chris, but I will continue to fight for the ALS victims of today who can’t hug their children or care for themselves, and for the victims of tomorrow who will be slowly robbed of their ability to move. I’m not alone in this fight – Chris’ sister and I put together Team J.A.C.K., and we are joined each year by dozens of family and friends that help us FIGHT FOR A CURE for ALS. Will you join our Team, or put one together for someone you know and love? Maybe it’s a family member, a friend, a coworker. Everyone seems to know someone affected by ALS – who do you know?
Let’s FIGHT together. I urge you to join a team, to donate to a friend, to participate in events to educate your community about ALS and its devastating effects. Please, do whatever you can to FIGHT FOR A CURE.
Thank you, on behalf of Team J.A.C.K., for Jacob, Abigail, Chris, and Kelly, thank you.