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5340Re: hello

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  • mbeelen00
    Dec 3, 2007
      I'm Marian and we live in Holland.
      We have a son Jeno and he is 7 years old who has MTM.
      He's also doing great; can walk a little and doesn't need
      ventilation yet.
      He's on "normal" school with a little bit extra support.
      He loves his school and his friends.
      He also love dinosaurus and pokemon.
      He hate doing things that are difficult for him.....
      So, welcome tot the MTM club.....


      --- In Myotubular_Myopathy@yahoogroups.com, "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
      > 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
      > there : kr.sandjenta@...
      > see also pictures under markus in pictures
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