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Re: [Myotubular_Myopathy] Living with MTM

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  • Jet Harrison
    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
    Message 1 of 7 , 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
      support.
      Thanks for listening
      God Bless
      Omra

    • alison.frase
      My mother also was a care giver for our son Joshua the first 3 years of his life - he is now 11 years old. They have a very special bond that only grandmothers
      Message 2 of 7 , Nov 2, 2006
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        My mother also was a care giver for our son Joshua the first 3 years
        of his life - he is now 11 years old. They have a very special bond
        that only grandmothers can have. We are here should you have any
        questions or concerns. My number is 888.817.Josh God Bless - Alison
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