Darrell Lee has lost almost all control over his body as he grapples with the relentless grip of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.
Lying in his daughter Ashley Lee's Winter Garden home, the 72-year-old is kept alive by a series of medical marvels: a ventilator, feeding tube and a catheter. Communication has evolved into a language of subtle gestures: a closed-eye response for “yes,” a slight mouth movement of “I love you,” the shadow of a smile on his face. It's a poignant performance that requires a discerning eye to detect, but to Ashley Lee, it's a testament to the resilience that defines her father.
Though his muscles have failed him, his mind is awake.
“He's not one of those people that's going to say, ‘I'm tired. I don't want to do this,'” Ashley Lee said. “He always looks for a way to overcome.”
Darrell Lee was diagnosed with ALS in 2009. Each year, the neurogenerative disease strikes roughly 5,000 Americans. It often leads to respiratory failure and death within two to five years, according to the U.S. Centers for Disease Control and Prevention. Less than 10% live more than 10 years after diagnosis.
The quest for a cure or a cause remains elusive, with only a small fraction of cases showing hereditary links and a few medications that slow the disease's progression. Yet, hidden in Darrell Lee's past is a clue to why ALS chose him: he's…