As we near the end of ALS Awareness Month, facts and statistics about ALS can be found around every corner. The lifetime risk of developing ALS is just 1 in 300. The estimated annual cost of care is $250,000. These figures illustrate just a couple of the many hard facts about living with ALS, but they don’t begin to tell the whole story.
“My mom had spoken to us about how hard it was for her to receive the diagnosis of ALS three years ago, and how much she would lose because of this awful disease,” shares Ted Gibbs, whose mother, Sheila, was diagnosed in 2017 and passed away in March of this year.
“She would lose the golden years with my Dad, special moments with her wonderful friends and extended family, and time to shower her grandchildren with all of her love.”
And yet, what Ted and his siblings Bill, Pat and Carolyn remember most about their mother over her three-year journey with the disease is what she taught them in the face of her diagnosis. Sheila used her time with ALS to “ask for forgiveness, express innermost thoughts, right any regrets, and spend each day knowing it was some more time to let those around her know how much they have meant to her.”
It was that spirit that compelled Sheila and two dear friends, Margie Gipson and Molly Burke, to host the first annual June Afternoon of Friendship and Song last year. Sheila and her co-chairs welcomed their large circle of friends and family, including Sheila’s husband of nearly 50 years, Tom, and raised over $50,000 to support our Les Turner ALS family.
Sheila thought of others, not of herself. She sought to help those around her confront their own fears and anxieties. To Ted and his siblings, this came as no surprise. “She inspired us with her strong Irish spirit and determination, to rise above adversity to help her family and others in our community. That was how she lived her whole life,” explains Ted.
While the facts and figures surrounding ALS are important to share, we know the main source of hope and help are those members of our Les Turner ALS family who are living with ALS. They embody the spirit of what we do. And they remind us every day what it truly means to be a family, supporting each other every step of the way.