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July 1 Things are looking up at the RV park. Ana has found a house she wants to rent, and Preston found a computer chair he likes set out for free near the trash bin. Preston kept “Paw Paw” spinning him until he could spin no more.
Related: Every patient’s Dravet syndrome is a little different
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Ana eventually calls a friend, who suggests giving the medicine in emptied pill capsules delivered as a suppository. She grimaces. But she has already been at it for an hour. The odds that seizures will kill Preston increase every year; the damage in his brain may soon be permanent. She is compelled to try.
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.
Inside Children’s Hospital Colorado, Ana Watson stares across the small exam room at the woman in a white lab coat
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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.”
So, one morning in mid-October, Ana Watson cues up Jason Aldean’s “Big Green Tractor” on her phone and hands it to her 12-year-old son, still in his pajamas. And then something magical happens.
Everyone in her family has their own vision of what Preston might be. Ana’s mom sees Preston getting a job at a park running a lawn mower. Ana’s dad — the man who taught Preston how to be a boy, to love mowers and tractors, and to shout, “Crank it!” — imagines playing catch with his grandson.
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Walking toward him, she had no idea of the frustration ahead, and no inkling of the discomfort she would inflict on them both in her effort to bring relief. All she knew as she looked toward her seizing son was that she held in her hands the latest, best chance to move his life forward.
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Ana’s shoulders slump, and Milly tells her to back off.
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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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