Rare Krabbe Disease Focus of Emory Conference

She buried her year-old son that day, sat on her front porch that night and stared at the sky. Looking up at the stars, I thought, I know that I am not the only person this has ever happened to. I know there must be other families out there. But the doctor had said I would never meet another family affected, that the word Krabbe disease would never cross my path again. My son’s life had some kind of meaning. But when I looked up, I just saw this black hole.

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