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Carrier Moms

For moms who are carriers of Duchenne

Members: 132
Latest Activity: Mar 16, 2016

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Carrier Who Decided to Get Pregnant Anyway

Started by Jessica Argueta Tucker. Last reply by Sif Hauksdóttir Jan 4, 2013. 16 Replies

3 sons with DMD

Started by Betty Vertin. Last reply by Laurie Barton Mar 14, 2012. 3 Replies

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Comment by Trinh Nguyen on October 18, 2013 at 4:03am

Dear Kathi,

Thanks a lot. Can I have her e-mail ?

Dear Andrea,

You always know how to make a burden bearable. Thank you.

I need your advise too that I should check for my girl to face it from now or I just wait till at risk. I do not know which way is better for her.

Much thanks.

Comment by Andrea Cleary on October 17, 2013 at 5:18pm

Dear Trinh,... sorry. That "mommy guilt" can eat you up, so don't let it. We didn't know about Duchenne until we had kids, we couldn't possibly know, right? If we are carriers, then we got it from somewhere too, either our own mothers are carriers or we are the first spontaneous mutation (1/3 of cases with no family history). Do we blame our mothers in turn? No. Because they either didn't know (or couldn't do anything about it if they did anyway). We have the defective gene, but because we are women we are carriers. If we were born male we'd have Duchenne. Don't be hard on yourself. It is because of you that you have a wonderful son full of life who loves you with all his little soul and that you love and take care of in return. And hopefully Thuy will not be a carrier, but if she is she can deal with it before she has children, if that is what she wants. Hugs Trinh XXXXXXXXXXXXX


Staff
Comment by Kathi Kinnett on October 17, 2013 at 3:24pm

Trinh - i am so sorry.  I am sure that this is difficult news to come to grips with.  if there is anything that we can do to help you, please let me know. You might want to call Ann Martin - she is a genetic counselor who works with DuchenneConnect.  she would be more than happy to discuss your results and  your concerns.

Comment by Trinh Nguyen on October 16, 2013 at 9:40pm

I was just diagnosed as carrier. Understand it is not my fault, but it is because of me. Feel so so sorry to my son, and maybe my daughter too.

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.
 

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