I read with interest Ms. Nadine Kirby's Aug. 9 letter "Cheers to Florida's Muscular Dystrophy Awareness Month." I am the grandmother of two boys afflicted with the dread Duchennes Muscular Dystrophy.
DMD is the worst of the muscular diseases and it only affect boys. When Randy was diagnosed with DMD, his brothers were tested, as there is a 50/50 chance that other brothers will be affected. That was true in our boys' situation.
Matt, the middle boy, was infected; the youngest, Drew, is healthy.
Only boys inherit the damaged DMD gene. The mother passes the damaged gene on to her sons. The whole family is devastated by the DMD diagnosis. And the healthy child feels guilty. "My brothers can't run and play but I'm OK."
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The muscles of DMD boys are normal through age 5. Then they deteriorate to walking with a walker, later a wheelchair, and finally an electric wheelchair. The young man dies when the heart and lung muscles fail.
At school Randy would fall as his muscles weakened, and his classmates would try to help him stand. A family friend, a physical therapist, got permission to go to the school and explain to the children that Randy was to crawl to the nearest wall, then climb up the wall until he could stand.
Randy passed away at 22. Matt, age 26, has a tube in his throat to help him breathe. He is our computer whiz.
I applaud those who run to raise money to fight muscular dystrophy. And please be generous when the firefighters pass their buckets for your MD dollars.
Virginia A. Buss