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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.
“What I always tell people is you have to be really careful,” said Dr. Larry Wolk, the executive director of the Colorado Department of Public Health and Environment. “They have to know that it’s outside of the regulatory process, outside of the (Food and Drug Administration), and it’s very much ‘Buyer beware.’”
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Being Preston’s mother taught her not to cry because tears won’t make her son better. For her, there is a process: Try one thing, then move on to the next. Lessons can be learned and applied.
Dravet isn’t like other epilepsies.
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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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A voice tiptoed back to her with the peanut-butter-mouth slur of a child’s early words: “Wuh moh minuh.”
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Dr. Edward Maa, an epilepsy specialist at Denver Health Medical Center, worked with the most famous CBD provider in Colorado, the Realm of Caring, and a Colorado Springs medical marijuana doctor on a patient survey — one of the earliest studies on the efficacy of CBD in the state. The study found that nine out of the 11 families surveyed saw at least a 75 percent reduction in seizures. It was an overwhelming success rate.
The doctor looks at her list. She looks sympathetically at Ana.
She promises him that his little sister, Sydney, will dance if he takes his medicine. “I’m not doing it,” Sydney says.
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Public support for the legalization of marijuana dipped during the 1980s, but has grown dramatically in the past 45 years.
“I can’t be the parent who didn’t try,” said Janéa Cox, a mother from Georgia who brought her daughter to Colorado in March for treatment of seizures that left her unable to even breathe on her own. The move meant breaking up her family; her husband remained at home in Georgia.
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Her hopes for a new life seem to be coming true.
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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.”
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