New, and just wanting to say hello!
- 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.