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Preston’s breaths grew quieter.
A plan is taking shape.
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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.
Preston gently touches his friend Hailey McGuire
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July 4 “Paw Paw” Don Raynor, crossing off projects on his to- do list, is just another chance for Preston to get a horsey ride. With most of the moving and assembling done, Don will be leaving his daughter and grandson in the morning for the long ride back to North Carolina.
Instead, Preston turns his head side to side to avoid the dropper. Squirming on the couch next to his mother, he’s nearly as tall as she is. But hundreds of seizures a day have restrained his development to that of a 2-year-old. He is 12 years old, yet in many ways he’s a 70-pound toddler.
She was giving Preston a bath — not his first, not unusual. But then his eyes rolled back in his head and his face went white and his little body began to shake and Ana was certain he was dying. At the hospital, doctors quickly sent her home. Lots of kids have random seizures that never recur, they said. But Preston’s did.
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Turn the page, and there’s a picture of Preston in a white onesie. Then a picture of Preston sitting in a kid-sized Jeep.
In advance of the move, Ana reduced the dose of one of the three main seizure medicines he takes — a drug called Onfi — because she had heard from other parents that CBD amplifies it. He was now taking about a third less than what Greenwood had prescribed, although she didn’t tell the doctor her plan.
Since then, she says he has had far fewer seizures and is able to sleep through the night.
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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.
On Apr. 22, 2014, HB 843 passed the House Judiciary Committee by a 15-3 vote. The bill, sponsored by Republican Rep. Matt Gaetz, calls for "four regional orginizations around the state" to "grow, test and dispense" the oil. A patient registry would be created. Unlike other CBD legislation, HB 843 is not limited to seizure con***ions; patients with Parkinson's, Alzheimer's, PTSD and cancer would also qualify. It was passed by a 111-17 margin on May 1. The Senate version passed the bill by a 36-3 margin on May 2. Gov. Rick Scott signed th bill into law on June 16, making Florida the ninth state to legalize CBD oil.
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“He needs to learn to take it!” Ana says.
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The journey would be harder and more complicated than she ever imagined.
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