06/03/2026
I had a completely different plan for the start of Dravet Syndrome Awareness Month.
I had ideas, stories, and advocacy content I wanted to share.
Instead, we’re doing what many Dravet families know all too well: watching, waiting, and hoping.
Sometimes awareness isn’t a purple graphic or an educational post.
Sometimes awareness looks like a caregiver reviewing seizure plans, monitoring every change, preparing medications, and carrying the memories of past hospitalizations while hoping this time is different.
We’ll be okay. We have a plan. We’ve done this before.
But for now, my focus is exactly where it needs to be.
On Rosie.
💜