genetics
I don't know how to write what I am about to write. There is no easy way to do this. I am not one to be able to put his feelings down on paper. You know that. I am sure you know what this is about. We have not been able to go more than 10 minutes together without bringing it up. I feel as if I need a break from the arguing. So I decided to write this letter. Rather than yell and get distraught, I'll let you read exactly how I feel and you can write me back, in response. I don't want our emotions to get in the way of us making such a monumental decision not only in our lives, but also especially in the life of our son, Michael. We need to base our final decision on medical facts and do what we feel is in the best interest of Michael. What exactly does Michael suffer from? That's where we need to start this discourse. Of course we know that he has the disease called Duchenne Muscular Dystrophy. This disease is a debilitating illness that occurs in about 1 in 3,200 live male births. Michael just happened to be one of the unlucky ones. Usually a child is not diagnosed with DMD until he is between the ages of two and six. We were lucky to find out early that Michael was affected. The only reas
I want him to have both the best treatment and best opportunity to live his life to the fullest extent. We are lucky enough to have wonderful doctor that did the test to check on Michael. I've already been there and don that. We have to set expectations for Michael. I DON'T want him to die! I know you don't either. I think this is the best option we have. What else is there that we can do? Nothing. I feel that this is in his best interest. Is he retarded? Is he stupid? What the hell is the matter with him? But having such a wonderful doctor made us so much more at ease with this problem. Right now Michael is doing very well. This new treatment called gene therapy is untested and we don't know if it would even work. Michael would want it to be that way too.
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