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When Casey was diagnosed with this disease, as  her mother, I was overcome with grief and despair like I'd never known before.  I had watched the gradual deterioration Casey's dad suffered-- and Casey had been his primary caretaker during the last and most painful and suffering days of his illness.

She was a trooper.  For two years, she went to nursing school by day, and by night she took care of her son Joshua and her dad and studied until 2-3 AM each evening just to get up and do it all over again.

The grief I feel to this day at the prospect of her painful future fills me daily.  It also drives me to find a treatment or cure for this ultra rare form of Muscular Dystrophy.