Help Us Raise Awareness

Discussion in 'The Loafing Shed' started by Esa, Mar 2, 2009.

  1. Esa

    Esa New Member

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    Niemann-Pick Disease was the subject of a CBS News segment which aired last
    night, featuring the Papier family of Frederick, Maryland.

    This is the rare disease that our son, Michael, died from in 2004. We searched for a diagnosis for 3 years before the doctors could figure out what was wrong. Slowly, information is getting out, but there's still a long way to go.

    To view the segment, visit
    http://www.cbsnews.com/video/watch/?id=4836925n&tag=main_home_MediaBox

    Please view the video, post your comments, and forward the link to your
    family and friends. Our goal is to make Dillons segment the most-viewed
    story on the CBS Web site. If enough interest is shown in the segment,
    perhaps CBS will do a more in-depth story and help raise awareness of our
    quest for a cure.

    Thank you!
    Cindy
     
  2. Shelley

    Shelley Senior Member

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    Esa, I'm so sorry for your loss.

    I watched the segment and choked up when Dillion's father choked up talking about living for the moment.
     

  3. kats

    kats New Member

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    So sorry for your loss. I've never heard of this disease and will definately pass the link to others.
     
  4. Esa

    Esa New Member

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    Thanks for your thoughts.

    Living for the moment is the best way to handle it. For us, it was all about what made Mike happy. Smiles and laughter, family and friends, as much as possible.

    When he was at the point where he was unable to write legibly, and walking and talking were difficult, one of his teachers told me that her goal was to get Mike to laugh at least once a day. I loved that teacher!