We are sorry to announce that Henry Curylo passed away peacefully in his sleep on Friday, July 12th, 2019 due to complications with his diagnosis of Dravet Syndrome. At age two, Henry was diagnosed with a rare and severe form of epilepsy. Dravet Syndrome is a genetic mutation in the DNA. For the past three years, based on the diagnosis, Sarah and Paul knew his life expectancy may be short.
For the past five months, Henry’s seizure control has been excellent and he has been living his best life. For the past week up until Henry’s passing, he and his family were at camp in NH and he was having the time of his life.