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3656Re: [Myotubular_Myopathy] Living with MTM

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  • Jet Harrison
    Nov 1, 2006
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      I too am a grandmother of a MTM grandaughter. Kaylee, in fact. She is a real blessing. I have noticed looking through lots of MTM information that there are very few females talked about. I hope your granddaughter is doing well. We hope Kaylee will be out of the hospital soon - her one year birthday is coming up in 28 days!
      ----- Original Message -----
      From: odomit
      Sent: Tuesday, October 31, 2006 9:33 PM
      Subject: [Myotubular_Myopathy] Living with MTM

      I am here for support. I have been main caregiver for my granddaughter
      who has MTM but it is not X linked. She is 20 months and we are very
      proud of that. We as a family have pitched in and are on her like a
      glue. I struggle with the reality of how her quality of life is going
      to be. She is smiling now and babbling some. I have many fears and no
      where to share them. I am in hopes that this might become a place of
      Thanks for listening
      God Bless

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