In July of 2017, I received the life-altering diagnosis of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. ALS is insidious, robbing its victims of the ability to walk, dress themselves, talk, swallow, and ultimately breathe. All while leaving the mind perfectly intact. Already, I’ve lost all use of my left arm and approximately 60% of my right.
ALS has no cure and no effective treatment. The average lifespan from diagnosis is three to five years. I’m not sure what my journey will bring because every individual’s experience with ALS is different, meaning there are a lot of unknowns for me and my family. What I do know is that I’m focused on doing everything I can to fight this disease and delay its progression into the more debilitating stages. As many know, I have a passion for life. So as difficult and sad as this diagnosis is, I remain positive and gather my strength from the outpouring of love and well-wishes from my family and friends.
I’m an outdoors enthusiast and enjoy many activities like fishing, hunting, hiking, camping, skiing andgolf. I played football in high school (team captain) and college and have always been passionate about sports. I love live music and have been known to enjoy a concert from time to time. Even though ALS has limited my activities, I continue to find ways to enjoy life by surrounding myself with friends and family. My faith and positive outlook allow me to take it “One Day at a Time” and live one of my favorite mottos “Tour for Life”.
On this journey, my family will face extraordinary medical and incidental expenses. ALS treatment is not covered by insurance and estimates for medical costs alone range from $200,000-$300,000 each year, covering ventilation, feeding tubes andin-home care. Additional large expenses may include moving to a new home with greater accessibility, wheelchairs, lifts, a specialized van, long-term clinical trials, aides/in-home nursing and technological devices to offset muscle paralysis. No one knows how long my fight will last, but I’m assuming I’ll battle longer than the average person, and I plan to be here for another 10+ years. Unfortunately, this will leave a tremendous financial burden on me and my family.
My wife Peyton and I have three children, and while they may receive some financial aid for college due to my diagnosis, it’s likely that we will still face over $250,000 in additional expenses to finance their educations. It pains me thinkI will be placing such a burden on them.
Peyton and I have dedicated our lives to raising our family and giving whatever possible to the community in New Canaan, CT. I have coached my children in various youth sports (football and soccer) and worked with local charities including Special Olympics, American Cancer Society andSt. Jude Children’s Hospital.
For those of you who are able to donate and help us face this growing mountain of expenses, we are deeply grateful. Your contributions are helping me to face this sad and difficult disease with dignity and pride.
With love and peace,
Chris “Cheese”, Peyton, Graham, Gwen andBrooke.