Anatomy of a 97,000% drug price hike: One family's fight to save their son

Updated 3:15 PM ET, Fri June 29, 2018

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Newport, Rhode Island (CNN)Trevor Foltz splashes in the pool in his grandparents' backyard. His brother and sister join in the fun, as does their father.

Their mother, Danielle, watches from a nearby lawn chair. She's like a hawk, keeping a close eye on Trevor and the rest of her brood.
It was 10 years ago in this backyard when a similar moment of revelry was shattered. Trevor, then a toddler, was running around, having the time of his life, his mom keeping steady watch.
Trevor suddenly came over, placed his hand on her knee and looked directly into her eyes. He tried to speak but couldn't say a word. Then his head twitched ever so slightly to the right. Their gazes locked. Mom's heart wrenched.
It was so mild that Danielle told herself it must have been her imagination. She didn't tell her husband, Jonathan, or anyone else. But moments later, it happened again: Trevor coming to her, resting his hands on her knees, looking into her eyes.
Trevor plays with his brother and sister, Toby and Bristel, in the swimming pool at their grandparents' house. The family swims together every weekend in the summer and uses the time together to bond.
Trevor's condition soon became obvious to all. The Foltzes were eating dinner with friends a few days later when Trevor had one seizure, then another and another.
    "Some heartache transcends language," Danielle recalled. "This is one of them."
    The Foltzes had been there before. At 7 months, Trevor was diagnosed with infantile spasms, a rare and catastrophic form of epilepsy. The diagnosis was devastating, forcing the family to cancel an overseas move and fight for their son's life.
    It also thrust them into the unregulated world of America's drug prices.
    Trevor's doctors said he needed a "miracle drug" known as