I have been wishing for a cure since my Sister, Shirley was diagnosed with Pompe when she was 35. Then at age 40 I was diagnosed. She was the one who found a drug trial for a possible treatment. We were both accepted into the drug trial. We both were so excited to be in the study. Now 14 years later it's only me receiving treatment. She lost her battle to Pompe in May 2013. My dream is a cure for this disease. Even though I stand alone in my fight I feel my Sister still beside me. We had such a close bond. Two loving brave Sisters who stood up to Pompe.
Mary Joyce
Overland Park, Kansas
