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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 Jennifer Collier on June 24, 2008 at 3:24pm
I just found out last week that I am a carrier of DMD. My 2 1/2 year old son was diagnosed with DMD on May 29, 2008. I was tested that day and the results were positive. I am having trouble coming to grips with passing this horrible illness to my little darling. It just seems so unfair.
Comment by Tonya on June 24, 2008 at 11:25am
Yes, I think it is a heavy burden. I still do feel a lot of guilt about my carrier status. My story seems to be a little different from others, but I would be interested in hearing from anyone who may have had a similar experience. I feel as if I should have known better. I had a cousin named Mark who had DMD. My Mothers sisters son, he was much older than my sister and I. He lived in Montana, but we did see many times. We knew what he had, but he ended up passing away at almost 27 years of age in 1989. My sister and I were teenagers at that time. When my cousin was diagnosed my mother went through testing in the 1970's. At that time she was told that they could not tell her conclusively if she was a carrier or not. Anyway, my Mother just had me and my sister. Time went on and my sister and her husband wanted children. At that time about 10 years ago she was told that we needed blood samples from many relatives to compare and of course Mark's blood. He had passed away many years before and we didn't have a sample of his blood. They did have a biopsy of my cousin here in Seattle where I live, but it was so old it could not be read and apparently they did the biopsy's different at that time. My Aunt was also across the country and my GrandMother was also no longer with us. The genetic counselors did tell us that in about a third of the cases DMD just pops up. There were no other cases of DMD in the family and also very interesting my GrandMother had 5 brothers all fine. My sister found out she was having a girl and went on. Then it came to me and I talked with a genetic counselor and they told me that they would not run a DNA sequencing on me that without knowing my cousins mutation that it would be extremely difficult to know if I was a carrier. I wish I would have pushed harder, I don't know if they gave me correct information or not. Anyway, my husband and I discussed it and decided to have children. We first had a little girl who is now 3 1/2. Then when we got pregnant with our son I was nervous, but really thought no one else in the family had it and they can't tell me for sure, I thought it would be okay. Then once I was pregnant I knew I wanted him no matter what. Again some time went on, but it was always in the back of my mind. My son had hit all of him milestones, sitting up at 4 months, walking good by 14 months, which still was in the "normal" range. Anyway, I kept worrying and talking with my pediatrician about it. She didn't recommed any testing or anything. Then one day I came across on the internet that by doing a simple CK test that I wouldn't have to worry if it was normal. So anyway, at my request my pediatrician ran it. The first test came back at 18,600 and then 5 days later 22,000. Then we went on the Seattle Children's and were diagnosed. We now go to Cincinnati to see Dr. Wong. Anyway, we now know that my son has a deletion of exons 48-50. This is what has happened in our family. My GrandMother was a carrier, her two daughters, my Aunt and my Mother are carriers, my Aunt's son had DMD, my sister and I are carriers, my daughter is a carrier and my son had DMD. The only one that is not a carrier is my sister's 10 year old daughter. Anyway, I feel so much guilt over all of this. I do feel good that we now know and we can end passing this on in the family from now on. I would like to hear anyone's thoughts on this. Thank you!!
Comment by Tanya Fleming on June 24, 2008 at 10:07am
Being a carrier is a heavy burden for us to have. At first I was really a basket case with it. How could the mother who is suppose to give birth the their children give them such a terrible disorder. I understand now that it was just something that happens. I use to feel guilt, but now I feel empowered. I have had a Doc even say to me "What you don't believe in Birth Control" Needles to say he is not my childs Dr. He was a student Doc in Richmond, Va. and I told the reg Doc, not to let that man ever see my children. They are so scientific that some of them lack the caring compassionate attitude they should have. Children are my life and just because they have DMD I am not giving up my right to mother them the way they need it. I will Cram 80 years into 20 if I have to. They will know in the end that I was there and would have traded places with them if possible. I don't give them everything they want, but I give them my time, love, and crazy sense of humor. We are always laughing and when we all get down, we have this game we play. We look at each other with a crazy look in our eyes and growl and Say Muscular Dystrophy will not bring me down. After doing that a couple of times we feel better. Take care all you other wonderful mothers and remember we are special!!!
 

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