The Ice Bucket Challenge that is sweeping the Internet prompted a young woman named Amy Phillips to write to the NBC Today show. They posted her letter online with the headline: “I don’t care if it’s a gimmick: Please, please dump ice on your heads.”
“My dad died from ALS when I was 3 years old,” wrote Phillips. “He was 36. My mom was 33. That was 30 years ago. Now I’m the same age my mom was when my dad died. And there is still no cure for ALS.
“This is what happens when you have ALS: Your muscles slowly stop working, one part at a time. For my dad, first he couldn’t use one of his hands. Then his arm. Then the other arm. Then he couldn’t walk. Then he couldn’t stand up. Then he couldn’t talk. Then he couldn’t swallow. Then he couldn’t breathe. Then he was dead. This all took about two years.”
Twenty-six-year-old Anthony Carbajal, himself recently diagnosed with ALS, posted a similar opinion in his video when he did the Challenge. ALS doesn’t affect a large number of people, only 2 of every 100,000 people. The disease is incurable and the prognosis is clear – coincidentally the mortality rate is 2 of every 100,000 people. Some people die within a few months; 80 per cent of people with ALS die within two to five years of diagnosis.
There are maybe 3,000 Canadians and 30,000 Americans with ALS and Carbajal points out that those numbers make it hard to find research dollars for a disease with such a small market. As he puts it, “I am not worth saving.”
So keep dumping ice on your heads. It does mean much for those families who have faced ALS alone for far too long.