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Jessica Raynor reads Preston a bedtime story
Ana and Preston head off to school
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While some can be treated by targeting the specific areas of the brain where the seizures’ electrical overloads originate, Dravet’s seizures come from everywhere, the result of a genetic mutation that occurs in every nerve cell in the brain.
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A voice tiptoed back to her with the peanut-butter-mouth slur of a child’s early words: “Wuh moh minuh.”
So, one morning in mid-October, Ana Watson cues up Jason Aldean’s “Big Green Tractor” on her phone and hands it to her 12-year-old son, still in his pajamas. And then something magical happens.
The neurologists were baffled and kept hunting for new medicines.
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“It’s a boy!” the sticker on the page proclaims.
May 12 Preston spits out his seizure medications, which were mixed with sweet tea. He took the first few squirts easily, but as more of the undissolved pills filled the syringe, the taste and texture became much worse. Preston’s meds have been masked in everything imaginable — sweets, ice cream, whipped cream, ranch dressing — which he eats on almost everything. But all attempts are less and less effective.
In a lab in Seattle, black mice twitch uncontrollably as they work their way through an electrified cage, furry little avatars of kids with Dravet syndrome...
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“But they don’t seem to me to be as long,” Ana said.
Today, there are 427 children under 18 on the state’s medical marijuana registry, including 13 under 2 years old. That total number is up from just 60 in August 2013, when the documentary aired. More arrive every month.
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She asks about the amount she’s giving. “Should I up it?”
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