The first sign was snorting. We thought it was a cold or the polyps. Robin (the editors have changed all names) was five years old. A short time later he could neither hold a spoon nor a pen without tapping them on the table first. He was sitting next to me on the sofa with his yogurt, spoon in hand. Knock three times, then eat. Then knock again. He started jumping like a bouncy ball and threw his head back. He started biting his nails until he bled. Thankfully, I didn’t realize at the time that grueling, desperate years lay ahead.

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