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They started with a drug called Depakote when Preston was 3 months old. But the seizures continued — as did the new treatments: Klonopin and Felbatol and Keppra. Zonegran and Topamax and Diamox and Banzel. Vitamin infusions. A special high-fat diet. An implanted electrical nerve stimulator. There were two other drugs not yet fully approved by the federal government that cost hundreds of dollars a month. There was another that has also been suggested for use in executions.
July 24 Preston gently touches his friend Hailey McGuire as she rests at his home. Hailey, Tami King’s daughter, also has Dravet syndrome. King had stopped at Watson’s home for the comfort of a friend after a doctor’s visit at which Hailey had her seventh grand mal seizure since 2 a.m. and is “still in seizure mode” as Tami calls it. There is a connection between Dravet mothers, but there also seems to be a deep understanding between Dravet kids.
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.
Ana gives Preston his CBD oil
CBD to treat spasticity caused by multiple sclerosis
July 1 Don Raynor and daughter Ana Watson go over the real estate application for a house Ana wants to rent in Colorado Springs. Don reads everything very carefully: He is worried about Ana being so far from home and whether her income will cover everything she and the kids will need.
She checked her phone for online answers. Finally, eager to move on, she set the phone down.
Ana takes the family to the shore
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.
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.
The neurologists were baffled and kept hunting for new medicines.
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.
“It’s OK,” Milly whispered again. “It’s OK.”
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