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Ana tries to keep her daydreams in check. What good is it to view her child as something he’s not? But there is one thing she hears the parents of Dravet children often say, and, yes, she hesitantly admitted, she would like it, too.
In her hand, Ana holds the first dose of what she hopes will finally stop the seizures. More than a dozen medicines have already failed, and continuing down the certain path of conventional treatments promises only more misery and maybe even death for Preston. So Ana has chosen uncertainty in the form of this amber oil created in a Boulder County garage.
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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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The neurologists were baffled and kept hunting for new medicines.
“OK,” Ana said, “One more minute.”
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But, when parents such as Ana Watson arrive with little more than a desperately sick child and a hope to make it better, they walk into uncharted territory. They become part of a medical experiment that plays out in living rooms, not doctors’ offices.
Ana Watson holds her son, Preston
So, one morning in mid-October, Ana Watson cues up Jason Aldean’s “Big Green Tractor” on her phone and hands it to her 12-year-old son, still in his pajamas. And then something magical happens.
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July 16 Recovery room nurse Breanne Hagihara explains to Ana Watson that she will have to use extra care for the next six weeks as Preston’s incision for his gastrostomy tube heals and the permanent button can be put in at Children’s Hospital in Aurora.
October 7 Preston and Haleigh dance while Tami watches in the background. The families met at Milly’s house for dinner in order to save money on food and to get together for something other than emergencies.
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The doctor continues down the list of anti-epilepsy medications, collecting the medical history of Ana’s 12-year-old son, Preston, whose seizures cause such unrelenting brain damage that he functions at the level of a 2-year-old. The doctor ticks through 13 different medicines, but Preston has already tried each one, to little effect.
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While some can be treated by targeting the specific areas of the brain where the seizures’ electrical overloads originate, Dravet’s seizures come from everywhere, the result of a genetic mutation that occurs in every nerve cell in the brain.
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