I am Steven Shappell
a family member of someone we've lost to ALS
Every spring we'd head to Florida to watch Cardinal spring training.
My younger brother Scott was diagnosed with ALS in 2008 and passed away on April 1, 2015.
From the time when we were little children, Scott and I played little league baseball while our Dad coached us (Dad’s favorite team was the St. Louis Cardinals). We literally lived baseball. Every spring we’d head to Florida to watch Cardinal spring training.
Scott was an exceptionally talented pitcher. In high school he pitched for the Cole High School Cougars in San Antonio, Texas. In college he pitched for the University of Dallas Crusaders.
Following college Scott went on to get his MD and PhD, taught for many years at Vanderbilt University Medical School. He did that until he and two partners started a medical diagnostics company named Avero Diagnostics, in Dallas Texas.
After his diagnosis, he continued to live abundantly, traveling the United States in a Recreational Vehicle with his wife, son and other family members; writing and publishing a novel, a reflection on living with ALS (entitled “I Reach Over”) and a book of poetry; and in general guiding his older sister and brother.
He did not want to die in a hospital or in an assisted living home among strangers. In accordance with his wishes, my sister turned her Pueblo Colorado home in to a care facility for Scott. When he passed he could only move his head and swallow food and red wine (his favorite beverage). He died in my sister’s home with his mother, sister and brother in law at his side.
That’s my ALS story.