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Re: [Myotubular_Myopathy] Care plan now done all ready to send

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  • Elizabeth Peil
    I would like a copy of marconis care plan. You can email it to me directly if you wish. Thank you. Liz ... Ahhh...imagining that irresistible new car
    Message 1 of 4 , May 3 8:52 PM
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      I would like a copy of marconis care plan.  You can email it to me directly if you wish.  Thank you.
      Liz


      Ahhh...imagining that irresistible "new car" smell?
      Check out new cars at Yahoo! Autos.
    • burcu
      Dear Rachel, I am a mother of 2 months-old baby. My son was born with diffuculties of breathing and swallowing. Also because he was floppy at birth they did a
      Message 2 of 4 , May 24 12:53 AM
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        Dear Rachel,
        I am a mother of 2 months-old baby. My son was born with
        diffuculties of breathing and swallowing. Also because he was floppy
        at birth they did a muscle biopsy to tell it was myotubular
        myopathy. Very recently the genetic testing also proved the
        diagnosis. Now we know that our son-Ýlker is suffering from X-linked
        MTM. I know survival really depends on how severe a case the baby
        has and how much help/support the medical system can provide.
        Because of the rareness of this disorder we don't get enough
        professional support here in our country. I am always being told
        that that there is no cure or treatment for X-linked MTM. So we will
        really need assistance from the ones who has experienced or suffered
        from this disease. Following an advice I joined this e-group. So I
        was scanning through the messages and I saw your message about care
        plan. If you don't mind I would like to have marconis care plan,
        maybe it could help. Thanks,
        Burcu


        --- In Myotubular_Myopathy@yahoogroups.com, "rachel_wrigley"
        <rachel_wrigley@...> wrote:
        >
        > dose anyone want a copy of marconis care paln just to give you all
        an
        > idea on what to put on yours
        >
        > thanks
        > Rachel
        >
      • Wendy
        Dear Burcu Welcome to this chat group and congratulations on the birth of your little baby boy. As well as the care plan, if you look on Toni Abram’s
        Message 3 of 4 , Jun 4, 2007
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