Comedian Jerry Lewis offered hope to families with relatives suffering from Muscular Dystrophy. He died Saturday at the age of 91. When I was younger, I watched the telethon with rapt attention; for whatever reason, I was drawn to it and the cause. At age 9, I held my own Muscular Dystrophy carnival. In high school we watched the local fundraiser live, in a mall. I went to a college that was handicapped accessible, and one of my classmates had MD. I even saw him on the telethon my junior year of college.
When I gave birth to my twins in 1998, my daughter Stephanie was born with a neuromuscular disorder, similar to MD but not, there is still to this day, no diagnosis.
As we struggled to care for her deteriorating body, the telethon held a different meaning for me. This time what they did, the research and care of those afflicted, had relevance in my life. I will never forget the first time I called during the telethon to donate; I could barely speak to make my pledge.
Though we didn't have a diagnosis of Muscular Dystrophy and was unable to utilize the facilities, I still donated, because I understood how difficult it was to care for someone whose body was dying. Physical therapy, doctor's appointments, medicine, nursing care, hospice care. I would watch the telethon, as long as I could stand it, crying because it as so close, because I felt the hope, that some day, all these undiagnosed diseases would have a name. Because with a name, there was a gene and with a gene a treatment could be researched. Hope.
Some day other parents wouldn't have to live through the pain, anger, sleepless nights, nursing shortages, as they watched their child suffer with breathing issues, oxygen shortages just before the weekend, or hospital stays.
Jerry was the spokesperson for the Muscular Dystrophy Association and no one knew the reason why he did this. Why he stayed up for three days over Labor Day weekend, every year. Only his first wife knew. It was a remarkable devotion to a cause and his death makes me sad. It's a reminder of my daughter and her struggle, of all the times, I searched for resources to assist with finding medical equipment or nursing help. What the MDA does for so many is make it easier for families to care for their loved ones and most importantly it offers hope that one day a cure will be found. May he rest in peace. He will be missed.
To donate – MDA.org