My husband and I avoided getting pregnant for 8 yrs, because I knew I was a carrier and my late brother had DMD. 

I put my faith in God and hoped that Aiden would not be diagnosed, but we accepted that he might be and would keep him anyway.

Although I feel super guilty and horrible that I did this to my son I am still so very happy he is here with us and that we get to raise him and spend time with him.

He is only 3 months old and was diagnosed three weeks ago. We want to have another baby with In Vitro and genetic testing on my eggs. Still, I am so very worried about the possibility again, now that the initial pain of his diagnosis is getting better, I am thinking I should not get pregnant unless I use another egg other than mine.

Has anyone done In Vitro with genetic testing and succeeded?

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what are the cost involved in this type of testing?  I just found out the day before thanksgiving that I am indeed a carrier with 5 healthy brothers none of whom have the slightest idea how to interact with me now.  I feel so lonely.  my  mom believes her heart problems and tiredness is undiagnosed fibermylasia.  She  believes i was a fluke and she just doesnot carrier it.  Im really hear though and so isnt my struggling 5 year old son.  All night I got to hear how athletic my brothers sons are going to be.  no idea how much pain and segregation i was feeling.  why do i want my mom'to get carrier testing so bad?  I think ill even offer to pay....Im really sad

Hi Kathleen,

We are in the same boat (genetically speaking), but you seem to be paddling a lot harder than me. I think you are experiencing that carrier guilt that slips in and sits on our chest. You have to let it go, stop paddling so hard and just float down the river, or you will not have any energy left to care for your family the way you want to.

I also have absolutely no family history of DMD. It began with me and will end with my son. Other than the concern for her health, does it really matter if your mom is a carrier or perhaps has mosaicism? My mother also refuses to have the genectic test, saying that her CK level has been tested and is fine. There are 2 female cousins that could possibly be affected, but they have been warned to get checked out. We can't force people into it. They have their own decisions to make and consequences to live with.

I find this denial or refusal by family members is like a form of prejudice. You may read on some other discussions here where families were actually "ashamed" of or tried to shame unsuspecting carriers, like they should have known there was something "wrong" with themselves and should never have "spread the contagion" by having children.  Hogwash!

Perhaps I have misinterpreted your message, and I appologize if that is the case. Have your daughter tested when you can so that she can make informed decisions as an adult woman if she is indeed a carrier. Thank goodness and medical technology that we now have such things as genetic testing and IVF/PGD.

Family get togethers and social situations can be excruciating in the early years as you listen to folks talk proudly of the athletic accomplishments and academic successes of their kids. Let's face it, you do it for your non DMD kids too, of course. It gets better with time. I like to stay in the conversation by making everyone realize just how lucky they are (because it really is just luck or lack of it in the genetic game) by saying things like, "Well, Simon can't do any of those things, but he is really good at _____ and _____ . And everyone tells us that his smile lights up a room". 

You're hurting right now, and I am sorry for that Kathleen. We've all been there. I wish I could wave a wand and make all our suffering disappear rather than some feable words of encouragement, but that is all I have.

Take care,

Andrea
 


Andrea

Thank you so much for responding.  Somedays are so much harder emotionally than others.  I read your response the next day and felt blessed for your words.

Thank you,

Kathleen Devine
Andrea Cleary said:

Hi Kathleen,

We are in the same boat (genetically speaking), but you seem to be paddling a lot harder than me. I think you are experiencing that carrier guilt that slips in and sits on our chest. You have to let it go, stop paddling so hard and just float down the river, or you will not have any energy left to care for your family the way you want to.

I also have absolutely no family history of DMD. It began with me and will end with my son. Other than the concern for her health, does it really matter if your mom is a carrier or perhaps has mosaicism? My mother also refuses to have the genectic test, saying that her CK level has been tested and is fine. There are 2 female cousins that could possibly be affected, but they have been warned to get checked out. We can't force people into it. They have their own decisions to make and consequences to live with.

I find this denial or refusal by family members is like a form of prejudice. You may read on some other discussions here where families were actually "ashamed" of or tried to shame unsuspecting carriers, like they should have known there was something "wrong" with themselves and should never have "spread the contagion" by having children.  Hogwash!

Perhaps I have misinterpreted your message, and I appologize if that is the case. Have your daughter tested when you can so that she can make informed decisions as an adult woman if she is indeed a carrier. Thank goodness and medical technology that we now have such things as genetic testing and IVF/PGD.

Family get togethers and social situations can be excruciating in the early years as you listen to folks talk proudly of the athletic accomplishments and academic successes of their kids. Let's face it, you do it for your non DMD kids too, of course. It gets better with time. I like to stay in the conversation by making everyone realize just how lucky they are (because it really is just luck or lack of it in the genetic game) by saying things like, "Well, Simon can't do any of those things, but he is really good at _____ and _____ . And everyone tells us that his smile lights up a room". 

You're hurting right now, and I am sorry for that Kathleen. We've all been there. I wish I could wave a wand and make all our suffering disappear rather than some feable words of encouragement, but that is all I have.

Take care,

Andrea
 

Here where we live there is no PGD that you can do.. 

I am a carrier and have 2 sons with dmd but didnt know i was a carrier until they were diagnosed.

We decided to try for another baby, and did the CVS testing and turned out that it was a girl.

If the pgd would be avalable here we would have defenatly done it.

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