We talk about daddy a lot. We say good night and good morning to him every day. Nari knows she had an incredible daddy who had more love for her than could be contained on earth. And now, he watches us and protects us the way he always physically wanted to.
The last few years would have been extremely difficult without our friends and family. However, our journey with ALS would have been simply impossible without the Association. The staff at The ALS Association greeted us with the most caring, gentle, yet realistic and sympathetic arms. We were not alone. Not only did the ALS community help guide us through the jagged blinding terrain of ALS, they were our advocates, therapists, financial advisors, medical advisors, insurance agents, cheerleaders and confidants. The ALS Association redefined what I consider an “association.” They were and forever will be our family.
I miss Harper more than I could ever express. But I know he left angels on earth to take care of Nari and me. Among that list of angels are the entities who make it all possible at our local chapter of The ALS Association.”
An ALS diagnosis can be more than frightening. There are way too many unknowns. The ALS Association was there for my dad and my family right from the beginning. The support they gave all of us went beyond what we could have expected – from helping our family cope with the diagnosis, to lending our dad a wheelchair when he was no longer able to walk. And those are just two examples out of so many. For me, personally, the Walk to Defeat ALS® and their annual Dinner and Auction Gala have helped me realize that my family was and will never be alone.
Everyone at The ALS Association understands what it is like for families of those touched by the disease and because of that, they are able to provide support in ways that no one else can. Unless you have lived through watching this disease affect a person’s body, there is truly no way to understand what it’s like watching a loved one fight it.”
“I have had ALS for thirteen years. When I was diagnosed, there was no ALS Association, no support, and definitely no community. Things have changed a lot in thirteen years.
I am a veteran and served our country from 1985 to 1997 in the US Army. Helping the local chapter, I attended the Association’s National Public Policy Conference in 2002, and was glad to be part of the ground-breaking study that lead to the understanding that veterans are twice as likely as others to be diagnosed with ALS.
My wife and I were blessed to have our daughter, Malia Rose, six years ago. Being diagnosed with ALS while being a father to a young child is incredibly difficult, but I was lucky to still have enough strength to hold my newborn baby in my arms.
Not one thing I do now is easy. From just turning my head, to picking up anything, to even opening a bag of chips – everything has changed. The ALS community has changed a lot too, and luckily, it’s all for the better. Why? Three words. The ALS Association. They’ve helped me learn how to live with ALS and provide me with incredible support and hope along the way.”
Photographs generously donated by Michael Keo Photgraphy.