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  • kaboodlemom
    I m Mary, and I just found this site, so I;m not even sure I;m doing this correctly. I just wanted to pass on some words of encouragement to all the parents
    Message 1 of 2 , Aug 17, 2002
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      I'm Mary, and I just found this site, so I;m not even
      sure I;m doing this correctly. I just wanted to
      pass on some words of encouragement to all the parents of
      AMC children out there. I'm 47, have AMC, and when I
      was born, the doctors did not even know if I woud
      survive. Then they said i would never be able to take care
      of myself, and recommended that i be institutionalized. My
      Mom said no way, and altho i spent a good portion of my childhood
      in casts and traction, and I am still far from perfect, I am
      completely independent; have a full-time job, can drive, walk.
      I pretty much can do everything everyone else can do; i just
      do it a little awkwardly. I'm sure doctors are more knowledgeable
      than they were back when I was a baby, and I didn't have the most
      severe form of the disease, but I guess my point is: Listen to what
      the doctors say, but take it with a grain of salt. They don't really
      know your child and what he/she is capable of. And they don't
      rareally know you either. Don't get discouraged; progess may be slow
      but it will come. And try to let
      them do as much as they can by themselves, even if they take 3 times
      as long to do it.
      Thanks for listening, and best of luck to all.
    • bryteazthesun
      I am a single mother of a two (almost three)year old little boy who was born with arthrogryposis and vocal chord paralysis,all they can tell me is
      Message 2 of 2 , Sep 1, 2003
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        I am a single mother of a two (almost three)year old little boy who
        was born with arthrogryposis and vocal chord paralysis,all they can
        tell me is arthrogryposis still not sure what type.I am looking to
        talk with others who understands about amc,and poss. meet.
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