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Re: Looking for mom of XLMTM non carrier

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  • melanie and my son James smith
    In response to your email, My name is Melanie i don t seem to be a carrie, My son James who died 2 1/2 years ago aged 11 months had a comlete deletion of the
    Message 1 of 3 , Jan 30, 2009
      In response to your email, My name is Melanie i don't seem to be a
      carrie, My son James who died 2 1/2 years ago aged 11 months had a
      comlete deletion of the exon 9 gene, they can not confirm whether or
      not i am a carrier, so i live my life as a non carrier, am 4 months
      pregnant with my second son who is free of the MTM1 x link condition.
      If this helps at all i'm happy to help, I live South Australia. i can
      send my number if you think that i'd be any help,
      Cheers melanie

      p.s my personal email address is angel.james@...



      - In Myotubular_Myopathy@yahoogroups.com, "patsarah2006" <patsarah@...>
      wrote:
      >
      > Hi guys. I have recently been in contact with a mother who lost her
      son
      > at approximately 1 month of age. He had X-linked MTM. She is not a
      > carrier. She is interested in speaking with other non-carrier
      mothers
      > who have lost a son. I wondered if you all new of anyone who might
      be
      > willing to speak or email with her. Please contact me directly and
      > include your phone number please. Thanks. Sarah
      >
    • Pat or Sarah
      Thanks guys, we got plenty of support for this request. I think it is so great that we can help each other out like this. Sarah
      Message 2 of 3 , Feb 1, 2009
        Thanks guys, we got plenty of support for this request.  I think it is so great that we can help each other out like this.  Sarah
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