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She’s learning that when it comes to Preston’s treatment, tra***ional medicine and marijuana have at least this much in common: There are still far more questions than answers.
At the North Carolina Children’s Hospital in Chapel Hill in May, Dr. Robert Greenwood hustled into the meeting room wearing a tie covered with Dr. Seuss characters.
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But Preston watched rapturously, planting his elbows onto his knees and his head into his hands. His eyes are a deep walnut color and are framed by long eyelashes. Brown hair swirls atop his head in casual rebellion. His smile is all in the top lip, pulling up past his gum line to reveal a row of glimmering teeth.
“But you have to be careful that you’re not making things in your brain,” she said. “We’re all watching him and his behavior.”
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July 7 Preston, curious about everything, watches his new pediatrician, Dr. Edward Maynard, adding notes from the 12-year-old’s first visit and examination at Iron Horse Pediatrics in Colorado Springs. Doctors, hospitals, nurses and tests have been a part of Preston’s life since he was diagnosed with Dravet syndrome as a baby.
July 11 Sydney Watson, 8, tries to get older brother, Preston, to drink some sweet tea. Sydney was Preston’s little nurse when they were younger, helping her mother care for him. Preston hasn’t been eating very well or taking medications without a fight lately, and Ana asked Sydney to help.
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October 8 Penn Mattison and Shawn McCafferty load tall holding racks with cannabis plants to be hauled to the drying warehouse during the Realm of Caring hemp harvest in eastern Colorado.
October 8 The Realm of Caring drying warehouse is slowly filled with the plants from the 17-acre grow plot. This strain of marijuana has less than 0.3 percent THC and qualifies as hemp under Colorado’s marijuana laws.
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The migration began just over a year ago, when CNN aired a documentary featuring a Colorado girl named Charlotte Figi, whose constant seizures caused her to stop speaking for months. While taking a form of the marijuana treatment, the seizures subsided, and she bloomed anew into a happy child seen laughing and playing in video clips. News stories began reporting that other children were seeing similarly miraculous results. To parents of kids with severe disorders, the articles seemed almost out of a storybook. So it was fitting that the brothers who grew the marijuana for the kids named their product Charlotte’s Web.
“You think you’d get used to seeing him like this,” she said. “But it scares me to death every time.”
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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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