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New, and just wanting to say hello!

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  • Rebekkah
    Hi my name is Rebekkah. I have a 5 year old son and nephew that both have x-linked myotubular myopathy. I am so excited to find others that are going through
    Message 1 of 2 , Dec 31, 2006
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      Hi my name is Rebekkah. I have a 5 year old son and nephew that both
      have x-linked myotubular myopathy. I am so excited to find others that
      are going through the same thing. I can't believe I haven't found this
      forum before. (I was doing research for school and found this!)
      Anyways I just recently had our third child which was a boy and thank
      god he was healthy! (Our family is starting to believe there is a
      50/50 chance again!) We did have testing done via amniocentesis and
      knew before he was born that he would be MTM free, but there is
      nothing like hearing a baby cry after they are born to confirm. Well,
      I have lots of questions, but I plan on reading through some of the
      discussions first to see if the answers are there. It has been nice to
      have my sister for support and information, but I am so happy to find
      a group of people that are experiencing some of the same things.
    • Wendy
      Welcome Rebekkah and Mai-Lis (and I m so glad to be in contact again mai-lis)! This website is really helpful. Please do ask absolutely anything as someone
      Message 2 of 2 , Jan 3, 2007
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        Welcome Rebekkah and Mai-Lis (and I’m so glad to be in contact again mai-lis)! 

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