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.
By: George Fox Wow! That was a long time ago! BUT, luckily, we are still here! Phoenix is now 18 years old, and while we loved him being able to push his chair around the house, he can no longer do that. He actually isn’t really even strong enough to control an...
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