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“But they don’t seem to me to be as long,” Ana said.
Ana was only 19 when she learned she was pregnant with Preston. She was a college freshman who had to take a break from school and live with her parents for a few months in rural Whitsett, N.C., while she prepared for motherhood. Her pregnancy was normal, aside from the delicate tremors she sometimes thought she felt in her womb. Her high school sweetheart, Preston’s father, drifted out of her life. He has never seen Preston in person.
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September 17 Preston helps “Paw Paw” Don Raynor tighten gates on the stairs during his grandfather’s visit from North Carolina to bring wife Milly her car. Milly has moved into her own apartment to relieve some of the tension that can arise between her and Ana. She plans to live in Colorado as long as her daughter and the children are here.
Tami King and Ana Watson recheck dosing measurements
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Milly walks out of the room, saying they should try later.
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Ana gets a firsthand view of the trimming and drying process
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July 23 An absent seizure looks and feels just like it sounds: Preston stopped interacting, staring into nothing, drool leaking from his mouth, his hands unmoving. It was a startling change from the blinking and jaw-working during his “normal” myoclonic clusters. Dravet syndrome children experience many types of seizures. The seizures can change, and some children will have a combination of seizure types, all during one episode.
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July 11 Sydney Watson, 8, tries to get older brother, Preston, to drink some sweet tea. Sydney was Preston’s little nurse when they were younger, helping her mother care for him. Preston hasn’t been eating very well or taking medications without a fight lately, and Ana asked Sydney to help.
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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.
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