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Once begun, the morning ticked along with practiced precision. Ana made the fried potatoes Preston only ever wants for breakfast. Eight-year-old Sydney quietly dressed and got ready on her own, until it was time to ask mom to fix her ponytail.
The journey would be harder and more complicated than she ever imagined.
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After Preston’s birth, the doctors told Ana that his strange leg twitches were common — the result of underdeveloped musles. It was three months later that she learned the doctors were wrong.
He grew reluctant to eat or drink, which left him not only weak but also not getting the right dose of conventional medicine hidden in his food. The day the movers arrived, Preston sat on the grass holding his grandmother’s hand while the blinkies attacked.
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“Stop arguing with me!” Ana finally says. “Damn.”
“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.”
The nation’s leading researchers and pharmaceutical representatives working on new treatments for epilepsy gathered at a conference this June in San Francisco. They fit in a medium-sized hotel meeting room...
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October 8 Horticulturist Penn Mattison of Tennessee heads to the holding racks with cannabis plants during the Realm of Caring hemp harvest. Penn and his family moved to Colorado in January, 2014, looking to help his daughter with undiagnosed intractable epilepsy. “Everything just worked out,” he said about working for the Realm.
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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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Sitting in the hospital meeting room, Greenwood said there was little more he could do for Preston with the medicines available. Without something new, Preston’s seizures would continue into adulthood — assuming he didn’t die before then.
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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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