after years of testing, tristan was finally diagnosed in june 2016 with scn8a, a disorder that was only identified in 2011 by geneticist michael hammer , who had been researching the cause of his daughter shay’s epilepsy. he made the discovery just weeks after shay died at the age of 15 from sudden unexplained death in epilepsy, which happens more frequently to kids with scn8a.
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“our hope is just to help people understand,” said juliann bradish, a kalamazoo, mich., resident and co-founder of an online support group now comprised of 125 of the 150 affected families around the world. when bradish’s daughter, adeline, was diagnosed in 2013, there was almost no information about it, she said.
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