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Re: [Myotubular_Myopathy] Would like to talk with others with myotubular myop...

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  • mlhayes99@aol.com
    MY 6 YEAR OLD NEPHEW HAS ONE OF THE RAREST FORMS KNOWN AS X-LINKED MYOTUBULAR MYOPATHY
    Message 1 of 3 , Oct 29, 2001
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      MY 6 YEAR OLD NEPHEW HAS ONE OF THE RAREST FORMS KNOWN AS "X-LINKED MYOTUBULAR MYOPATHY"
    • redscootee@webtv.net
      That is the kind that my son and I have. I am 50 and my son 26. I am using a scooter but my son is still able to walk just has trouble with stairs. Looking
      Message 2 of 3 , Oct 29, 2001
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        That is the kind that my son and I have. I am 50 and my son 26. I am
        using a scooter but my son is still able to walk just has trouble with
        stairs. Looking forward to hearing from you either on group or off.
        pat
        http://mdasw.tripod.com
      • robert.shapiro@chase.com
        ... My son is 4 and has the x-linked form of Myotubular Myopathy. He is also part of a study group being conducted by Gail Herman a geneticist from Ohio State
        Message 3 of 3 , Nov 11, 2001
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          --- In Myotubular_Myopathy@y..., mlhayes99@a... wrote:
          > MY 6 YEAR OLD NEPHEW HAS ONE OF THE RAREST FORMS KNOWN AS "X-LINKED
          > MYOTUBULAR MYOPATHY"

          My son is 4 and has the x-linked form of Myotubular Myopathy. He is
          also part of a study group being conducted by Gail Herman a geneticist
          from Ohio State university. We also are part of the Myotubular
          Myopathy resource group which is rub by the Scoggins. Please let me
          know if you want information about anything specific. My son has a
          traech and uses a pulmonetics 950 vent at night. He goes to school
          and is very happy and very smart. He gets many therapies and he gets
          low level electric stimulation at night from a TES machine. You can
          reach me at my e-mail address whic is Robert.shapiro@....
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