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5Re: Newly Diagnosed

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  • robert.shapiro@chase.com
    May 25 8:55 AM
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      --- In Myotubular_Myopathy@y..., "Helene" <rhccr@o...> wrote:
      > Hi. My 13 month old so was diagnosed this past Thursday. Would
      like
      > to communicate with others who could offer me advice.
      >
      > Helene

      Hi,
      My son Jay Jay has X-linked Myotubular Myopathy. He attends public
      school 5 days a week for 2 hours a day. He will be 4 in July. He has
      a traech and had a Laproscopic Fundoplication. Both were done when he
      was a few months old. He was diagnosed at 1 month old and is part of
      Gail Herman's study. He can sit by himself unsupported and he has
      started to talk alot lately. He has a Passey Muir Valve. He is on
      a Vent at night. It is a Pumonetics 950. This vent is about the size
      of a laptop PC so it is convienient for traveling. It has a
      cigarrette lighter attachment for the car. If you want to know more
      about any of these things or if you just want to talk let me know.
      Bob
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