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In that time, Preston started feeding himself, using a fork without help. He pushed himself around on his sister’s two-wheel scooter without falling. He remembered to say “Please” and “Thank you.”
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.
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A desperate hope and well-publicized stories about kids who have responded to the drug drive the families here, despite scant research on CBD’s overall efficacy. Scientists know so little about the treatment that it’s not even clear what CBD might do in the brain to impact seizures.
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“We can’t force him to take it!” Milly shouts.
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Finally dragging Preston from bed, Ana sat him in his skull-and-crossbones pajamas in front of the television and turned on a video of Barney the dinosaur. Sydney walked by and scrunched up her face. She had already outgrown Barney.
Over the fireplace hung a photo of Preston in a straw cowboy hat. He’s shirtless, leaning onto his left elbow. His mouth is closed and his eyes set in a stoic glare, and he appears startlingly mature — a boy trying to look like a man trying to look like a rock star.
“Yes, that’s what we got with that,” Ana says.
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The documentary about Charlotte Figi aired the next summer, and by late 2013 — as Preston approached his 12th birthday stuck in the same developmental rut he had been in for his previous nine — the online whispers of a marijuana miracle in Colorado had turned into a roar. One by one, other Dravet children’s parents — with whom Ana had become close friends online but never met in person — began arriving in Colorado, posting hopeful updates on their children’s progress. The hope tugged at her.
Related: Big pharmaceutical companies consider medical marijuana
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It wasn’t until his second year of life that Ana began to notice the toll the seizures were taking. When other kids Preston’s age were learning more words and stringing them into sentences, he didn’t. When walking and grasping led to running and catching for other children, it didn’t for Preston. It was as though his life ground to a stop, even as time ticked on.
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“It’s been a constant struggle of trying to limit the number of seizures he has,” Greenwood said of Preston, who at age 1 started as a patient of Greenwood’s. “We have tried literally everything.”
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