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June 22 Preston is in all his glory with his grandfather, “Paw Paw” Don Raynor, for his last ride on the Grasshopper in North Carolina before the move to Colorado. Preston’s family wants to try CBD oil to control his seizures.
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So now Ana is sitting in the hospital whose doctors have been the most outspoken in Colorado in urging parents not to use marijuana to control seizures — it’s too risky, they say; there are too many unknowns — and she is hoping for advice on what to do.
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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.
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Ana Watson looks across the living room of the Colorado Springs house that still doesn’t feel quite like home and sees her son, Preston, sitting stiffly on a brand-new couch. His eyelids flutter, struggling against the seizures that have quaked through his brain every day since he was 3 months old.
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Dravet isn’t like other epilepsies.
It was subtle. But Ana swore there was a change in her son. He was more talkative, more stable on his feet.
Preston is talking.
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Ana is tight beside Preston
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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May 7 Preston resists his mother’s gentle requests to get up as he curls up to his little sister, Sydney, 8. Ana Watson’s mornings quite often start with both of them in her bed at her North Carolina home.
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“That would be really nice if he got that far,” he said, “but there’s not much evidence right now he’s moving toward that.”
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