We live in New Mexico and we like to go camping and hiking as a family.
When did Colton’s seizures begin?
His seizures started at 5 months. He had multiple status seizures that lasted between 5 minutes and 2 hours, which is why he got genetic testing.
What is your family’s hope for your future? For the Dravet community?
My hope for our guy is that he will walk someday. I hope kids diagnosed now will live longer and have a better quality of life than the older dravet kids like our son and the older ones that didn’t have options like there is now.
What advice do you have for newly diagnosed families?
The Dravet journey is not a sprint, it’s a marathon.