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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...
It sunds so much better than calling it an ordeal.
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“He is quite capable of going into a seizure that is basically all the time — all day and all night,” Greenwood said.
A bundle of 21 multicolored electrical wires poke from the top of a wrapping on Preston’s head, running off the bed and to the computer. Every gesture, every word, every eye blink shows up as activity on the screen, where blue, maroon and green lines measure Preston’s brain activity. It is one answer to the question that has vexed Ana for the past 12 years: What is happening inside her son’s head?
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It wasn’t until Preston was 6 years old that doctors finally put a name to his con***ion: Dravet syndrome. And in some ways, that was worse than not knowing at all because it meant there was no cure to find.
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Ana Watson holds her son, Preston
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July 1 Things are looking up at the RV park. Ana has found a house she wants to rent, and Preston found a computer chair he likes set out for free near the trash bin. Preston kept “Paw Paw” spinning him until he could spin no more.
“Oma” — Preston’s grandmother Milly Raynor
July 4 “Paw Paw” Don Raynor, crossing off projects on his to- do list, is just another chance for Preston to get a horsey ride. With most of the moving and assembling done, Don will be leaving his daughter and grandson in the morning for the long ride back to North Carolina.
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“We’ve pretty much tried everything else we can,” she reasoned.
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