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5341Re: [Myotubular_Myopathy] hello

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  • Amanda Hollingsworth
    Dec 3, 2007
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      Hi Mai-lis. I believe you and I have corresponded before. I'm glad to hear that Markus is doing well. My son, Jacob, is doing great, too. He will be 6 years old in February.
      It is good to hear from you.
      Amanda Hollingsworth

      Scott & Betsy Grant <scottnbets@...> wrote:
      Dear Mai-lis,
      Hello and welcome to the group! My name is Betsy, I have a son who is 11 years old and is on a vent for 18/24 hours and is doing well. Tell us more about yourself and Markus. There are many kind and knowledgable people on this group who can help answer questions you may have and offer support.
      kind regards

      On Nov 22, 2007 4:45 PM, mailis.hagen <mailis.hagen@...> wrote:
      my name is mai-lis hagen.
      i live in norway and have a son name markus, he is 5 yrs old living
      with myotubular myopathy.. school boy next year.. he is ventilated at
      night and all day without. he is doing great :)
      it was great to find a site like this :)

      wishing you all the best.. please email me if there is somebody out
      there : kr.sandjenta@...

      see also pictures under markus in pictures

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