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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.
June 18 A few days before moving to Colorado in search of new treatments for Preston, Ana takes the family to the shore in North Carolina for a short vacation.
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Her hopes for a new life seem to be coming true.
Preston’s grandmother supports his head
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Is this finally it?
“Why did we even come down here if he’s not going to take it!?” she snaps.
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“Are you seeing any results?” Jason asks.
He had 200 seizures Monday through Thursday, so bad he lost his swallowing reflex,” Lynch said. “I have 25 known drugs that he had to be put in a medically induced coma and these are all FDA approved and the side effects are just horrible.
As a pediatric neurologist, Greenwood had treated hundreds of kids with epilepsy in his 37-year career. But Preston’s case was a unique challenge.
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Preston resists his mother
“What I always tell people is you have to be really careful,” said Dr. Larry Wolk, the executive director of the Colorado Department of Public Health and Environment. “They have to know that it’s outside of the regulatory process, outside of the (Food and Drug Administration), and it’s very much ‘Buyer beware.’”
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A spectrum of illnesses afflict the children coming to Colorado for medical marijuana: cancer, autism, Crohn’s disease. Most, though, are seeking help for incurable forms of childhood epilepsy — diseases with names taken from medical-journal bylines: Dravet syndrome, Lennox-Gastaut syndrome and Doose syndrome.
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Preston loves country songs — the louder, the better.
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