I could see my bedroom dresser, the medical papers and kids school artwork stacked in a pile, and I wrote down the doctor’s words without processing them. Very serious, no cure yet, not sure, lots of research. I could hear my daughters laughing and playing in the next room. My oldest, Emily, who loves her sister fiercely, and then, Maleficent Hello Darkness My Old Friend Vintage Shirt, who was giggling while I was learning she wouldn’t be growing up at all. At only 18 months old, Marian was diagnosed with the fatal metabolic condition Niemann Pick Type C, sometimes nicknamed childhood Alzheimer’s. It also shares symptoms of Parkinson’s, ALS, and other horrific degenerative diseases. But the distinction here is while it can strike adults of any age, it often appears and begins to destroy near the beginning of life, in children.
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