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"Soon after Emily's diagnosis she began taking a drug called Zavesca, still considered experimental for use by NP C patients. It slows the effects of her disease, but it won't cure her. The Sandas went nearly broke paying the drug's $5,000 per month cost before they figured out that David's mother's health insurance is among the few that will cover experimental uses. In 2006, they legally gave up custody of Emily to her grandmother so they could get the drug for free. Emily still lives with her parents. The family moved to Oklahoma near David's dad about two years ago.

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