The story of Georgia Miller
My step grandson and his brother came to live with us when he was 3 1/2 years old. We had know since his birth that something was wrong but could not convince the birth parents to have him checked by a doctor. When he was going to start kindergarten his occupational therapist asked me if we had eve had his muscles checked. I asked her why but she wouldn’t tell me. Several months went by and I saw her again and told her that we were headed to Shriners for a checkup on his feet and I wanted to ask the doctor about his muscle. She then told me that she thought he had a form of muscular dystrophy. We talked with the doctor and he set us up with a neurologist at Shriners and a couple of months later we were told that he most likely had myotonic muscular dystrophy. We went to see a neurologist closer to home and without any testing this doctor walked into the room and looked at me and told me that both boys had it, they would both end up in wheelchairs and that they both would die. I was beside myself. A friend at work told me that I should get in contact with the MDA clinic in Kansas City. I got an appointment right away and found out that the younger boy was fine but his brother did have muscular dystrophy. We had a wonderful MDA advocate who came to all of his clinic visits. Since his diagnosis we have found out that it has affected his lungs. We tried the BIPAP, the cough assist machine, and oxygen but after 10 months of the machine going off all night long he told his pulmonologist that he was tired and didn’t want any of this any more. She told us that sometime quality of life is better than quantity. We had everything removed from our house. Just to let everyone know the first night we used the BIPAP he aspirated and we were in the hospital for a week. He had one other aspiration event before we had the machine removed. This young man at the age of 16 made the decision that he was tired and ready to go home to be with GOD so as a family we made the decision to not doing anymore hospitalizations and to just let nature take its course. When he gets sick we do the antibiotics if he needs them but that is all he wants. His faith is very strong and he has a very good relationship with our priest and he talks with him a lot about going home to heaven. At this point in time is has been sick since New Year’s Day but we have been on several rounds of antibiotics and are hoping that we can make it to prom which is April 1st and then high school graduation which is May 14th. I keep telling myself that I need to be more like him. He never has a bad word for anyone, he still wants to get a job when he graduates and wants to live at home until God takes him home.