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The closer the move came, the worse Preston seemed to get. He suffered a grand mal seizure at the fundraiser Ana and her parents put together to raise the $15,000 needed for the move. He suffered another grand mal returning from a last-second beach getaway.
“It’s a boy!” the sticker on the page proclaims.
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“You think you’d get used to seeing him like this,” she said. “But it scares me to death every time.”
The government safety sheets for each drug listed dozens of side effects. Tremors. Problems with walking or coordination. A potentially fatal rash. Panic attacks. Thoughts of suicide. Aggression.
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There have been times Blake would have a seizure every half hour, and his mother, Stacy Lynch, would worry how he would get through the night.
A bundle of 21 multicolored electrical wires poke from the top of a wrapping on Preston’s head, running off the bed and to the computer. Every gesture, every word, every eye blink shows up as activity on the screen, where blue, maroon and green lines measure Preston’s brain activity. It is one answer to the question that has vexed Ana for the past 12 years: What is happening inside her son’s head?
A voice tiptoed back to her with the peanut-butter-mouth slur of a child’s early words: “Wuh moh minuh.”
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October 8 Andrew Tobey waits for Cody Morehead to catch up as they hang the drying poles during the Realm of Caring hemp harvest in eastern Colorado.
“Help,” Ana writes in a Facebook message to the community of parents who have tried the same treatment. “He is spitting it out and gagging. Can I mix it with food, give rectal? Any suggestions?????”
Ana Watson watches as Preston gets his first dose
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Preston’s grandmother, Milly, thought he had the munchies.
July 24 Preston gently touches his friend Hailey McGuire as she rests at his home. Hailey, Tami King’s daughter, also has Dravet syndrome. King had stopped at Watson’s home for the comfort of a friend after a doctor’s visit at which Hailey had her seventh grand mal seizure since 2 a.m. and is “still in seizure mode” as Tami calls it. There is a connection between Dravet mothers, but there also seems to be a deep understanding between Dravet kids.
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October 7 Preston and Haleigh dance while Tami watches in the background. The families met at Milly’s house for dinner in order to save money on food and to get together for something other than emergencies.
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