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  •  Years ago, I heard a nurse describe an infant born (10+ / 0-)

    with one the genetic disorders that causes the skin to slough off.  The baby had no skin and screamed continuously for the three interminable weeks he lived.  There was nothing they could do for him and euthanasia was out of the question, of course.  But everyone knew what the eventuality was and the meantime was hell.

    Those who forget the pasta are doomed to reheat it.

    by CarolinNJ on Tue Feb 14, 2012 at 09:52:54 PM PST

    [ Parent ]

    •  Harlequin disorder? (1+ / 0-)
      Recommended by:
      HappyinNM

      I recall reading about a teenager who actually managed to live past childhood with that - he was pink, he was not permitted to go into the sun without SP 70 on, and he had to apply lotion to his skin many times a day to prevent it from cracking open and getting infected.  As an infant, he too was expected to die within a few weeks, but he surprised doctors by living on, and his parents decided not to give up on him. One very lucky kid.  

      Keep your religion out of my government.

      by catwho on Wed Feb 15, 2012 at 11:46:05 AM PST

      [ Parent ]

      •  No, not harlequin. There was a TV documentary (2+ / 0-)
        Recommended by:
        HappyinNM, Alexandre

        about three British children, same family, with harlequin.  Fairly recently.  The woman who related her experience did name it, but that was 40 years ago.  The parents never came to see him and when he died, his grandmother brought a suit for him to be buried in.

        Those who forget the pasta are doomed to reheat it.

        by CarolinNJ on Wed Feb 15, 2012 at 12:14:09 PM PST

        [ Parent ]

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