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“OK,” Ana said, “One more minute.”
Preston watches Dr. Maynard
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May 8 The dregs of his afternoon seizure medications are still on his lips as Preston rests on his porch after a long day of school interrupted by numerous myoclonic seizures.
An early and oft-reported survey of children on Charlotte’s Web found that 80 percent who tried it eliminated at least three of every four of their seizures. Now, even one of the specialists involved in that study questions whether it was overly optimistic. Subsequent studies have suggested the response rate might be closer to 30 percent or, perhaps, even lower.
“Colorado represents hope at this point,” she said. “This is the state of hope.”
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“No. Not yet.”
It wasn’t until Preston was 6 years old that doctors finally put a name to his con***ion: Dravet syndrome. And in some ways, that was worse than not knowing at all because it meant there was no cure to find.
May 11 Ana Watson struggles for a good hold on her sleeping son after a family visit with her parents for Mother’s Day in North Carolina. Although Preston’s mental development was halted at the toddler stage, he is not much shorter than she and weighs nearly 70 pounds. Ana’s strength and determination drive her across the yard and into the house to get her boy to bed.
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October 26 Preston has been eyeing his sister’s bike for a long time, taking every chance to sit on it when he could. On his 13th birthday, he finally has one of his own, with big training wheels.
August 6 Preston’s grandmother, Milly Raynor, supports his head as she tries to untangle him from a hose he tripped over, and a seizure kicks in. The pain from the fall while playing with a water slide appears to have caused the grand mal seizure. A doctor’s appointment the next day reveals a broken bone in his foot.
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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?
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