I am a 57 years old, I've been married for 37 years. I have 3 daughters and 4 grandchildren, 2 girls and 2 boys. I am an RN and work as a floor nurse on the nigjht. shift.
About my family:
My mother had 10 children, 3 girls and 7 boys. Three of my brothers had Duchenne. My mother's sister had one son with Duchenne. Two of my daughters are known carriers they each have 1 boy and one of the boys have Duchenne.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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Thank you for your comments. I remember when I was dating, I never told my dates or friends about my brother, because I guess it didn't accur to me to say anything. My brother and I would fight over games, if I frustrated him while playing chess or checkers, he would throw the board on the floor and I would have to pick the pieces off the floor. My mother would scold both of us, she treated him as normal as possible, I give her a lot of credit for trying to keep it normal. Nicolas was sick yesterday, when I spoke to him he tried to make me feel better about him being sick. He told me that he's ok as long as he doesn't have to go to school on Monday. (It's snowing today, I guess he is happy about that). He doesn't like anyone to worry about him. We let him do as much as he can by himself, thank god for Power Wheel chairs, it helps for Nicolas to be indendent, he has a little better life than my brother had. He even goes to a nearby grocery store with his friends, without his mom. I think it's great that he has friends that see him as any other kid. My daughter drops Nicolas and his friends off at the movies or the library. My mother could never have done this with my brother. I give my daughter so much credit for allowing herself to let him be as independent as he wants to be.
I know how you feel. My brother, 3 cousins and my uncle had DMD. We thought that we would never see this again in our family. About 5 years before my daughter gave birth to my grandson we went through all the genetic testing that there was at that time. We were convinced that she had a slim chance to be a carrier, we were told that she had less than a 10% chance of being a carrier, when she was pregnant she had an Amyo done, which came back that her baby had a 40/50 chance, and that she was carrying a son (but still no difinitive answer). Since then there have been more difinitive tests. We did all we could to find out what the chances were. After all that, I should not feel guilty at all, but it's something that always come to mind. We really should not feel guilty because we didn't do this, my daughter feels guilty, I told her she did everything she could to find out and that this is just something that was not under our control. My brother was a wonderful kid, good natured and never complained. We always enjoyed his sense of humor, my parents did a great job by trying to keep the family as normal as any family could be, but as I got older (being younger than my brother) I started to feel guilty that I didn't really understand what was going on, I always felt that my brother was like anyone else and I never realized the agony he must have been going through, my guilt was that I felt that I was selfish because I sometimes resented the attention that he got, even though my parents tried very hard to pay attention to me. My grandson Nicolas has the same wonderful attitude that my brother had, he is sweet, caring and never complains. He is smart and what can I say, he is just a delight. We love him to pieces, I can't stop kissing him when I see him. When I'm with him I feel wonderful, then when he leaves us, I feel so bad and angry that he has to deal with DMD. I feel so bad for my daughter and my son-in-law. Now that Nicolas is 14 years old, they are first beginning to realize how their lives have been turned upside down.
Does you grandson know that your brother's had DMD? I don't know how to tell Nicolas that my brother also had DMD, I'm afraid that he will ask how he died and how old he was when he died, I don't want him to worry about that same thing will happend to him. In my mind I have thought about what to say, I asked my daughter if he should be told, she doesn't know what to say herself, but she said if Nicolas should ever bring it, that I we would have to tell him. It's very hard but we should not feel guilty, but we do.
We all support each other and that is the best that we can do and to keep Nicolas's spirits up, is our first priority.
If you want to keep in touch my email address is: email@example.com