My Story

I endeavor to be as transparent as possible about my journey, and know just how isolating epilepsy can be. I aim to create a space of understanding, acceptance, and support to others.

In October of 2016 our daughter E, the last of five, was diagnosed with Tuberous Sclerosis Complex (TSC) which is the leading genetic cause of epilepsy after she had her first seizure at 7 weeks old. Life as we knew it had changed forever. We spent countless hours learning about TSC, epilepsy, anti-seizure medications, and children's hospitals. There were so many new parts to our lives and so much worry. With all the doctors appointments and hospital stays came along with it the electroencephalogram (EEG) tests. One day during a 3 day video EEG hospital stay, I mention how her hair was like rainbow princess hair. That got me thinking! How can I make the medical material that covers all the wires LOOK more like princess hair, or anything fun for that matter! Since then, I have been on a mission to bring this passion project to life. In doing so we have found a way to bring a little light to our situation by offering her choices on coverings during a test that she can't avoid. Now we want that for ALL epilepsy warriors everywhere.