On June 1st, we’ll be walking in the Steps for a Cure event to raise awareness and funds for the Dravet Syndrome Foundation (DSF). The foundation’s mission is to support and fund research into better treatments—and hopefully, one day, a cure—for Dravet syndrome and related epilepsies.

As many of you know, this cause is extremely close to our hearts. Owen had his first seizure at 8 months old, lasting 20 minutes and triggered by a fever. Since then, he has continued to have prolonged seizures with even very mild fevers, sometimes requiring multiple doses of antiseizure medications to stop them. We've had more ambulance rides and hospital visits than we ever imagined.

In December, we learned that Owen has a de novo (not inherited) mutation in the SCN1A gene. His type of mutation (truncation mutation) is strongly associated with Dravet Syndrome, a rare and severe form of epilepsy. While Owen doesn't show all the features of Dravet right now, this condition can evolve unpredictably. We carry with us a great deal of anxiety, fear, and uncertainty about the road ahead.

So many of you have supported us in so many ways. If you’re able, we’d be incredibly grateful for your support in raising money for DSF.