TRAE’s Story

I was diagnosed in 1991 at age 22 with AMD. I also have a sister who is severely affected by the disease. She was diagnosed 13 years ago at age 20.

In college, I began to notice that it was getting difficult to walk upstairs. I would get very winded, and my muscles would burn. After two muscle biopsies, I was diagnosed with AMD.

After college, I married and got pregnant. In my fifth month, I began to have serious problems. I became extremely weak and short of breath and was unable to walk more than about 10 feet. I was put on a Bi-Pap machine for nocturnal ventilation. Haley was delivered by cesarean section on September 9, 1993.

After Haley’s birth, I was determined to regain my strength and get off of the Bi-Pap machine. I did regain some strength but was never able to rebuild my pulmonary functions which are now 26% of normal. The disease is still slowly progressing. I have trouble keeping on weight. I am 5’4” and weight 93 pounds. My sister who is more severely affected is 5’7” and weighs 70 pounds.

I have been told that I should not have gotten pregnant—that it probably accelerated the progression of the disease. But even so, I would not change a thing. Haley is what my life is all about. She keeps me going and makes me smile on those days when life seems so unfair.

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