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3626Re: [Myotubular_Myopathy] Living with MTM

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  • Amanda Hollingsworth
    Nov 1, 2006
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      Omra,
       
      Hi! Yes, this is a great place for support. I've learned so much from others here, and I've made wonderful friends. 
       
      I have a 4-year-old son named Jacob, who has x-linked mtm. He is doing very well, but has struggled in the past with pneumonias and infections. He is in his 2nd year of preschool and just loves it.
       
      I think we all struggle with fears, but that is only natural. Please feel free to ask questions, vent, or just say whatever you want.
      Take care,
      Amanda

      odomit <odomit@...> wrote:
      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





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