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July 23 Physicians assistant Tom Dishion talks to Ana Watson and Milly Raynor at Iron Horse Pediatrics in Colorado Springs. Preston has been running a fever for three days, today at a steady 101.9. He has been complaining about his feeding button: “Out, out,” he says. They went from the clinic to an X-ray at Memorial Hospital to check the feeding tube placement.
While Preston played later in the backyard August sunshine, his eyes seemed to roar.
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Preston rides and controls a scooter
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Not so much in words that anyone else would recognize. But, as the notes leak from the purple headphones covering his ears, Preston wah-wahs with the beat.
“Is that the one that causes the rash?” Ana asks.
“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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Preston watches Dr. Maynard
Charlotte Dravet’s message to parents is simple: Don’t move.
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Ana’s shoulders slump, and Milly tells her to back off.
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June 18 A few days before moving to Colorado in search of new treatments for Preston, Ana takes the family to the shore in North Carolina for a short vacation.
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