I dont 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, Ill let you read exactly how I feel and you can write me back, in response. I dont 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? Thats 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 reason that we knew so early on was that Muscular Dystrophy runs in your family. This early detection was a blessing as we have been able to provide Michael with the best treatment and environment to grow up in as possible. If a curte should ever be found, Michael will be in the right place to receive it.
Also, he now receives adequate attention to help him with the psychological, physical, and social problems he may encounter in having this disease. As we both know Duchenne Muscular Dystrophy is a recessive X-linked recessive disease. You carried the defective gene, which is located on the X chromosome, and it was transmitted to Michael. He became affected because he only has one X chromosome. There was not another good copy of the gene to counteract your mutated copy.
This bad gene prevents Michael from producing the protein called dystrophin. Without this protein, muscle fibre breaks down and is unable to function properly. This is NOT your fault honey. There is nothing that could have been done to prevent this.
There was a fifty-fifty chance that Michael was going to be born with the disease. We are lucky enough to have wonderful doctor that did the test to check on Michael. His elevated blood level of muscle enzyme was detectable when he was born. This led to the conclusion that he was affected with DMD.
We found a specialist whom has helped us to the best of medicines ability. Michael is living his life as close to a normal childs as possible. Remember all the times that Michael would try to walk but couldnt? Arent you glad that we knew to expect that? We knew that, like most children with DMD, Michael wouldnt be walking until about eighteen months old. It would have been awful to not know why our child, our first and only child, wasnt walking when most other kids his age were. That would have been devastating. Can you imagine not knowing what was wrong? There would have been so many questions going through our minds.
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. Michael isnt dying from DMD, hes living with it. I know that much of what Im writing is stuff that you already know, but Im doing it to make us both think about it more. Right now Michael is doing very well.
He is just starting to have his share of problems. He is just beginning to waddle a bit and fall quite a lot. He also seems a bit awkward when walking around. And I hate to see when he is having difficulty rising from a standing or .