It occurred to us a few days ago that perhaps Tori’s Bucket List could be a catalyst to get Krabbe in the news. After all, everyone loves a positive story … Continue reading Tori in the News
Tag: Newborn Screening
Leukodystrophy Awareness Month – Day Thirty
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Giraffe Coloring Page for Leukodystrophy Awareness Month
My talented cousins came up with the idea to create a coloring page with a giraffe (and eyes like Tori) to help spread awareness and to remind people to both … Continue reading Giraffe Coloring Page for Leukodystrophy Awareness Month
The Day Before Krabbe…
Today marks six months since we have seen Tori smile. We only know the date because of this picture and the others from that day. It took us about … Continue reading The Day Before Krabbe…
I Hate Krabbe
Rarely does a day go by where I am not brought to tears because of the realities of Krabbe and the destruction it brings to its innocent victims – my … Continue reading I Hate Krabbe
Q&A Part Three: Newborn Screening, Legislation, and Genetics
I am still so new to the Krabbe world, so I am sure there is more I could add that I don’t even know yet. If you think of more … Continue reading Q&A Part Three: Newborn Screening, Legislation, and Genetics
Even So, Joy 