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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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July 4 “We’ll try something different,” Don Raynor says as he holds Preston’s mouth closed and massages his throat while Ana holds her son’s head to get Preston to swallow his medication. Preston has refused to take his meds without a fight for a solid week, and everyone is worried and exhausted by the efforts to get him to take them. This didn’t work either: He spit them all out.
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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.
It was about a month before the move away from their little brick house in Greensboro, N.C., and, sometime in the night before, Preston left his own bed and sleepwalked into Ana’s. Sydney was already there. When Ana woke before dawn, she was nestled between children.
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Ana’s decision to move had seemed like an easy one. In late 2012, she saw on Facebook a video of a California man using medical marijuana to treat his son’s seizures. “This brought tears to my eyes!” she wrote then.
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Ana eventually calls a friend, who suggests giving the medicine in emptied pill capsules delivered as a suppository. She grimaces. But she has already been at it for an hour. The odds that seizures will kill Preston increase every year; the damage in his brain may soon be permanent. She is compelled to try.
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Being Preston’s mother taught her not to cry because tears won’t make her son better. For her, there is a process: Try one thing, then move on to the next. Lessons can be learned and applied.
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