Families of children with rare, relentless Dravet epilepsy live with constant uncertainty

Kaylee Raia, left, and her mom, Carrie, center, work on a craft project at Camp Small Steps in Gurnee. Kaylee lives with Dravet syndrome, a rare and severe form of epilepsy. Courtesy of UCB and Dravet Syndrome Foundation

Most parents worry about scraped knees, tumbles on the playground or gym class injuries.

But for the Raia and Tisdale families, their everyday fears are life-threatening: a seizure that can strike their children at any time, set off by something as simple as a change in temperature.

Living with Dravet syndrome means being on constant watch, never knowing when the next call to 911 might come. The disorder is rare, affecting about one in every 15,700 children born in the United States.

Carrie Raia of Barrington remembers those first frightening months with her daughter,