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Hope for Preston
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“Is that the one that causes the rash?” Ana asks.
So, the entire day after that first dose, Ana watched Preston like a poker player looking for a tell.
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Preson’s eyes slowly opened somewhere under the fluff of his mother’s comforter.
June 30 Ana Watson blocks the door to keep Preston inside during an interview to evaluate the type and amount of care he will need in Colorado. Jennifer White, a clinical supervising nurse with the Certified Nursing Assistant division, and Mike Quintana, account manager with MGA Home Healthcare, base their assessment on state guidelines to provide for Preston’s medical needs.
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May 8 The dregs of his afternoon seizure medications are still on his lips as Preston rests on his porch after a long day of school interrupted by numerous myoclonic seizures.
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Walking toward him, she had no idea of the frustration ahead, and no inkling of the discomfort she would inflict on them both in her effort to bring relief. All she knew as she looked toward her seizing son was that she held in her hands the latest, best chance to move his life forward.
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Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.
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Is this finally it?
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Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.
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