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    HOPE FOR MARIAN

    A MOM'S JOURNEY TO FIGHT FOR HER DAUGHTER'S LIFE...AND SOME NORMAL STUFF TOO

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    Recent Posts

    Medical Journey to NPC Diagnosis

    June 22, 2017

    She's so small. That was my first thought when I first saw Marian, like a miniature porcelain doll.   

    At Marian's early well baby visits her weight gain left something to be desired. It took her several weeks to hit 7 pounds and at Thanksgiving, when she...

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    May The Odds Be Ever In Your Favor

    March 27, 2017

    Some adorable and dearly loved friends, not from The Hunger Games.

    The title of this post is from The Hunger Games, I read all three books and saw three of the four movies. You have to draw the line somewhere and I just could not see the last movie. Phillip Seymour Hoff...

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    Reaching for the Chicago Life Raft

    March 19, 2017

    Yesterday we got some great news. Marian has an appointment April 7 with an NPC expert in Chicago who has accepted her as a patient, given her a rush appointment, AND can begin administering the treatment if it's not ready in California yet. Our local hospital is hard...

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