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A faint smell of cow manure wafts in the breeze as Ana pulls her minivan up to a house in eastern Boulder County.
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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November 5 Ana Watson and MGA Home Healthcare nurse Chelle carry Preston to a bean-bag chair. Preston has suffered continuous myoclonic clusters most of the day. He had a 30-second grand mal seizure early in the afternoon. Preston’s new normal is to go straight back into myoclonic clusters after a seizure. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons.
October 8 Jonathan Berkbigler of Colorado Springs loads a horse trailer to transport cannabis plants to the drying warehouse during the Realm of Caring harvest in eastern Colorado.
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Preston starts singing.
“We have a special squirt-squirt we need to do, OK? You need to be a big boy,” she said.
July 17 A nurse stops in for a quick check on Preston’s incisions and tube during his EEG while he is snuggling with his mother, Ana Watson, at Children’s Hospital in Aurora.
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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.
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A handful of organizations have sprouted in the past couple of years to offer support to parents moving to Colorado and those already here. Communities of families have grown up to provide advice and encouragement and a happy source of friendship.
Most important, no one knows how often it works.
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April 15 Ana Watson keeps a sharp eye as Preston goes into a grand mal seizure on the frontage road near Castle Rock on Interstate 25 on their way from Colorado Springs to see Jason Cranford at his Rifle Mountain Dispensary grow in Boulder. Ana is visiting from North Carolina to change her residency and apply for a medical marijuana red card for Preson.
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At 12 years old, Preston cannot spell his name. He cannot reliably count to 10. He is still learning his colors. He doesn’t know his mom’s name or where he lives or how to call home if he gets lost. He wobbles when he walks and falls over easily.
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