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Her new friends in Colorado — parents who, like her, came to the state seeking hope through cannabis — cheered on her social media updates.
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She promises him that his little sister, Sydney, will dance if he takes his medicine. “I’m not doing it,” Sydney says.
May 11 To make sure Preston doesn’t bolt, Ana is tight beside her son, who wears his cool-down vest. The vest keeps his core temperature even. Here, he fishes and teases Lexi with a bluegill they just caught on Mother’s Day. It is a beautiful day for their last visit to one of Preston’s favorite places in North Carolina — the “lodge” at the Piedmont Quail Club, which his grandfather manages.
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Greenwood had been cautiously supportive of Ana’s move, in part because it preserved some of his input into Preston’s care. Tell a family no when they’re on the trail of hope, and they’ll leave you behind. For all of the parents asking him about moving to Colorado — Ana was not the first — Greenwood had told them the same thing: There’s no hard evidence it works, but there’s no hard evidence it’s causing harm, either.
Sitting in the hospital meeting room, Greenwood said there was little more he could do for Preston with the medicines available. Without something new, Preston’s seizures would continue into adulthood — assuming he didn’t die before then.
“When these kids come, we hear a lot about it,” said Dr. Larry Wolk, head of the Colorado health department and a skeptic of the treatment’s success. “They get their CBD oil or their Charlotte’s Web. And if they respond, we continue to hear about it. If they don’t, they quickly disappear.”
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“Why did we even come down here if he’s not going to take it!?” she snaps.
Preston’s baby book begins with pictures from a sonogram.
“He needs to learn to take it!” Ana says.
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A family photograph of Preston as a baby.
August 8 Milly supports Preston’s head, trying to calm Preston as he comes out of a grand mal seizure. Preston was playing with a water slide in the back yard when he fell and began to seize. A doctor’s appointment the next day reveals a broken bone in his foot.
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Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.
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