I had never met a person with ALS until November 11, 2007. On that day, my daughter came home with a story of a 14-year-old girl named Ashley. Her father had ALS. Burdened with the horrendous cost of caring for an ALS victim, this once prosperous family was in a precarious financial situation. To add to their misery, Ashley's mother lost her job weeks before Christmas.
Ashley is dedicated to her dad and helps with his most personal needs. She does things no 14-year-old should ever have to do. Ashley and her 11-year-old brother usually must stay home as caregivers when not at school. There aren't many movies with friends, sleepovers, football games, and other adolescent joys in her life.
After speaking to the family, I offered them financial relief. Realizing that there are thousands of families in the same predicament (or worse), I formed The ALS Guardian Angels Foundation.
Ashley's family is among the "fortunate" ones. We are overwhelmed with desperate pleas for help. Single mothers are losing their children because they can no longer care for them. Other victims live in isolation. As their ability to care for themselves slips away, unbearable depression may set in. Some consider suicide as the only way out of their misery. Exhausted caregivers needing respite may be on the verge of breaking down physically and mentally. I have seen it all first hand.
A cure is not on the horizon. Someone has to help. Who will it be if not us?