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It wasn’t until his second year of life that Ana began to notice the toll the seizures were taking. When other kids Preston’s age were learning more words and stringing them into sentences, he didn’t. When walking and grasping led to running and catching for other children, it didn’t for Preston. It was as though his life ground to a stop, even as time ticked on.
“It’s OK,” Milly whispered into his ear, trying to talk him out of the seizure. “It’s OK.”
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Watch Haleigh Cox was diagnosed with Lennox-Gastaut Syndrome as a baby. She is the namesake of “The Haleigh’s Hope Act,” a bill filed in Georgia to legalize cannabis oil high in CBD. The oil is used to control her seizures.
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“Oma” — Preston’s grandmother Milly Raynor
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“But they don’t seem to me to be as long,” Ana said.
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Holding the bottle of amber-colored oil in her hand, she scanned the report to figure out how much she should give Preston. But the report was indecipherable. How could she convert these numbers into the recommended dose?
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.
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Preston’s legs folded under him, and he crashed hard to the ground. Milly burst from her chair and ran over to him, reaching him in time to see his eyes roll toward his brows. And then, lying there in the grass he had soaked, Preston began to shake violently.
Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.
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Inside Children’s Hospital Colorado, Ana Watson stares across the small exam room at the woman in a white lab coat
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