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Just to get to this moment in July, she had to uproot her family and move across the country from North Carolina to Colorado, one of the few places where the new and unregulated treatment is at least somewhat legal. She’s committing a federal crime just for trying.
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There are the grand mals, known clinically as tonic-clonic seizures, that are full of violent convulsing that can last minutes. Preston falls into one about once a week. But much more common are the little eye flutters. In medical terms, they are called myoclonic seizures. Ana calls them “blinkies.” They look as though Preston is on the verge of sneezing.
October 8 Jonathan Berkbigler of Colorado Springs loads a horse trailer to transport cannabis plants to the drying warehouse during the Realm of Caring harvest in eastern Colorado.
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Related: Every patient’s Dravet syndrome is a little different
May 9 Preston’s at-home nurse Sheila Wall keeps watch after a sudden cloudburst while picking strawberries. Excitement and the quick drop in temperature brought on almost nonstop myoclonic seizures that Preston’s mother, Ana, fears may turn into a full grand mal seizure before they get home.
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Ana returned to the kitchen and shakily exhaled.
“We have a special squirt-squirt we need to do, OK?” Ana tells Preston, adopting a smile as she walks toward him. “You need to be a big boy.”
Watch Haleigh Cox was diagnosed with Lennox-Gastaut Syndrome as a baby. She is the namesake of “The Haleigh’s Hope Act,” a bill filed in Georgia to legalize cannabis oil high in CBD. The oil is used to control her seizures.
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Tami King and Ana Watson recheck dosing measurements
But the results were ultimately even less conclusive.
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“He is quite capable of going into a seizure that is basically all the time — all day and all night,” Greenwood said.
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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.
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