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“I can’t be the parent who didn’t try,” said Janea 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.
Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.
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“Silly mommy,” he says to Ana, as she snuggles into a single hospital bed with him.
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The hospital didn’t see any improvement in the before-and-after EEGs of four kids whose seizures appeared to lessen significantly. That may have been due to something called “electroclinical dissociation,” where the seizure still occurs but its outward indicators disappear. It also might be that parents can pick up on smaller improvements than an EEG can, said Dr. Kevin Chapman, a pediatric neurologist at Children’s who was a co-author on the study.
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October 8 Andrew Tobey waits for Cody Morehead to catch up as they hang the drying poles during the Realm of Caring hemp harvest in eastern Colorado.
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Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.
After the movers left, Preston’s blinkies hit even worse. Drool dribbled off his chin and onto his T-shirt. Milly, who was watching him while Ana packed up the last things, sensed a bigger seizure building. She fanned Preston, hoping to calm the blinking.
July 24 Preston gently touches his friend Hailey McGuire as she rests at his home. Hailey, Tami King’s daughter, also has Dravet syndrome. King had stopped at Watson’s home for the comfort of a friend after a doctor’s visit at which Hailey had her seventh grand mal seizure since 2 a.m. and is “still in seizure mode” as Tami calls it. There is a connection between Dravet mothers, but there also seems to be a deep understanding between Dravet kids.
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Ana grabs his arm, but he pushes her back. She tackles him and squirts the oil into his mouth, but he coughs it back up. She reaches for her cellphone.
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The closer the move came, the worse Preston seemed to get. He suffered a grand mal seizure at the fundraiser Ana and her parents put together to raise the $15,000 needed for the move. He suffered another grand mal returning from a last-second beach getaway.
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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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