We are a military family with 3 amazing kids. Will, our Dravet kiddo, is the middle child at 3 years old. We live in the Show Me State, Missouri. We live in a whirlwind of school and therapies but love being outside as a family.
When did Will’s seizures begin?
Will’s seizures began at 3 months old. For the first year, it was a blur of seizures and intubations which were required almost every single time. His longest seizure was over 3 hours around 6 months old. After his second seizure, we had genetic testing done which showed the SCN1A mutation.
What is your family’s hope for your future? For the Dravet community?
A CURE!! We are so excited watching all of the clinical trials open up for gene therapy and cannot wait to see what comes of it!
What advice do you have for newly diagnosed families?
One day at a time. You want to know what the future holds so badly, but that’s just impossible with Dravet. Every single day is different and you can’t do anything to anticipate it. Breathe in and out.