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We have a blog...and some hope

March 17, 2017

Well, I must admit, I always kind of wanted a blog, but I never really had anything to say. Not to be confused with not having opinions - which I certainly have no shortage of. I always preferred to live my life privately. Now, unfortunately, I do have something to publicly say, which is this: we need to save our daughter's life. She is 18 months old. And it is freaking stressful.


A couple days before Marian's Niemann-Pick Type C diagnosis there was this massive double rainbow near the girls daycare. I kind of drove around maniacally stopping to take pictures of it at the park. Emily would shout, "mom, I see it, I see it!" when it popped from between buildings and trees and I'd turn the car following her direction. It honestly felt like we might get to the end of it, we felt that close. Now, here we are. It's just a rainbow but I am drawing strength from it - I feel like we might reach the cure for NPC1 in time for Marian - we are that close...and also just that out of reach - today. We are going to keep reaching and I know we will make it. I'm like 99% sure.

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