Carrier Moms

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Comment by Amanda Hammond on January 9, 2013 at 9:08pm

I am a carrier mom and I just want to put a word out there to moms who want to have more children. Science is AMAZING. There are so many reproductive options out there that I hope you can all investigate for yourself if interested or for your daughters who may be carriers as well.

Comment by Jennifer Meador on January 8, 2013 at 11:06am

Hi everyone. My name is Jennifer and my son Joseph is in the process of getting diagnosed with DMD. I have known almost my whole life that I am a carrier of DMD. My brother and cousin had it. I've known what DMD was since I was 4 yrs old. When I met my husband, I let him know that I was a carrier. It never even crossed my mind to not have a baby. It's in Gods hands, and I knew that no matter what, it would be okay. My son is seven, we just started to see lots of signs about six months ago. It's always been in the back of my mind, but I think my husband and I were in denial about the whole thing. Now our eyes are open and there is nothing we can do about it but laugh through our tears, and smile and give our son the best life possible. I feel that it's a bit easier on us because we already knew it could happen. Living with DMD is hard, but there is so much hope now, there was very little hope when my brother was diagnosed in the 80's. My son knows he is different, but he is so happy all the time, and it doesn't bother him one bit. He is like a ray of sunshine, he has lots of friends, kids seem to be drawn to him. I don't feel guilty about giving my son DMD. He is here for a reason and he will have a wonderful life. Please don't sit around and cry, enjoy every moment. There are no guarantees in life. Parents of perfectly healthy children lose them too early. Anything can happen..we are not in control. All you can do is smile and enjoy the ride.

Comment by Kristin Linke on November 19, 2012 at 9:32am

I am struggling to stay positive.

Comment by Marian Lamberson on October 6, 2012 at 4:12pm

HI Kristin, I also have two sons with DMD and manifesting (i believe ) carrier, with a 15 month old daughter. Something someone told me once really made sense. " I well know the struggles that are ahead.  But there are so many, many, wonderful, special moments that most parents do not experience." it's a mom who also had two sons with DMD, only never had a daughter.  Take good care of your beautiful family and know you are not in this alone in this. 

Comment by Jeni Ward on October 6, 2012 at 1:40am

Kristin,

I have a 10 year old daughter, too, but she has not been tested yet (my 7-year old son has Duchenne and I am a carrier). I have had the same thoughts about grandchildren. But then I try to think that we are in a time of such medical advances that if she wants to have kids, she will. Try to remain hopeful, that is how I get through some of the hard days. I am very sorry, I can totally relate, I would be feeling the same. When I get her tested in a couple of years I will be asking you for advice! The whole situation just sucks and I wish there was more we could do about it. Hang in there.

Comment by Donna Cicardo on October 5, 2012 at 10:50pm

I like what you say Melissa. I have talked to my daughter who is 13 1/2 she has anxiety & depression so I have to be extremely cautious because too much info too early her psychiatrist says may cause more harm if given too early for someone so young. Take baby steps. I tell my daughter God has everything planned for a reason and he will guide us.

Comment by Wyatt's Mommy, Melissa on October 5, 2012 at 10:43pm

Kristin

1 have 6 kids. My 4 year old has dmd and my 18 year old daughter is a carrier. She was 15 so she was a little older than your daughter is. Does she know about your boys diagnosis? If yes ask her if she has questions. All my kids every one asked if they had dmd too. Even my daughter. I think if I were in your shoes I would let her come to you. She will have questions and probably is wondering what's going on with her too. Tell her she can ask you anything. She will likely start the conversation and you can guide it from there. My daughter was so upset. And I thought she"ll never experience the joy of being a mama. But that of course isn't true. Between ivf/pgd or adoption she can be a mama. And you shouldn't feel bad about the grand kids things. We've as well as our boys have been robbed of what so many take for granted, you should never ever feel bad about your feelings. Not for a second. Take care.

Comment by Donna Cicardo on October 5, 2012 at 10:38pm

I think about that too. I'm a carrier son has dmd and don't know about daughter. Knots in my stomach always. Mind constantly thinking about all of it. I pray to god that they find a treatment. Life is NOT fair!!

Comment by Betty Vertin on October 5, 2012 at 10:32pm

Hi Kristin, I have 5 children. 3 of my 4 sons have DMD. I have a daughter too, but have not had her tested yet. I have the exact same thoughts. You are not alone. This is a hard thing we have to deal with, but I just keep reminding myself that God is not a cruel God and he has something bigger planned for us.

Comment by Kristin Linke on October 5, 2012 at 10:22pm

I am not sure how to respond to the news I got today. I have three kids. When we found out that Gavin has DMD back in 2009, it was devastating, then I found out I was pregnant in 2010 I decided to get tested,I am a carrier. I knew then that the baby had a 50/50 chance of having it. When he was born, we had him tested a few month later and found out he too had it. Again was torn. Today I got a call from my daughter's Endo doctor, Skyler is a carrier. I am just not sure how to respond. Here I am a diagnosed carrier, my two sons have DMD and now my daughter is a diagnosed carrier. I feel Like I have been cheated. I don't know about many of you, but my thoughts went to OMG, I am not going to have any grandchildren. Is that crazy? How do I explain to my daughter that she is a carrier? She is 10 years old. I want to scream, I want to cry. I don't know what God's plan is for me and my children, but I pray that he gives me some direction.

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