My grandson, now 4years old, was diagnosed with DMD about a year and a half ago. There is no known history of MD in the family. My daughter tested positive as a carrier. Does anyone know whether or not being a carrier can be a fluke, or can it skip a couple of generations? I also wonder how other mothers that are carriers, deal with the guilt of passing this to their child? My daughter has massive, massive guilt over passing DMD to her son.

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Comment by Ofelia Marin on October 30, 2009 at 9:00pm
I agree with Cheryl, carrier or not the guilt is there at first. I am not a carrier and have not heard of DMD before my son was diagnosed. I did feel guilty for a while but then I realized that it was not in our control. As long as a prenatal test does not exist for families w/o family history there is absolutely no way to avoid this. After a while, the guilt starts to fade as you need to concentrate on making the best possible life for your son. This is one thing that we actually can control!
Comment by cheryl cliff on October 30, 2009 at 3:08pm
Hi Jan,

Unlike Patty (Hi Patty) I am not a carrier but at first the guilt is there for us non-carrier mom's too. I am not a carrier and there is no family history of DMD anywhere in my family. My sister is a Morman and has done geneology for us and even those documents don't show anyone anywhere with anything close to DMD. I think all DMD parents, dad's too, feel the guilt and its a tough issue. After awhile I began to realize I NEVER would have done this to my child, and so I knew it wasn't coming from me. Mutations happen spontaneously in nature. Even some animals get DMD, dogs and cats, although no primates.
Ultimately my husband and I came to realize guilt isn't going to help us overcome the things this disease brings to our family. So now we refuse to feel guilty. When it crops up - we push it out of our heads. That way its simpler to stay in the positive zone - a zone needed to keep the family up. Anyway you slice it, its a bad deal. Maintaining a good quality of life is challenging but doable, but there isn't much room for guilt or negative thoughts. I hope things smooth out for your family soon. We are all beside you/them for what ever that is worth. I wish you all the very best!
cheryl

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