Two little girls. One rare diagnosis. A whole lot of love, strength, and purpose.
Hi, I’m Addison — mama to Nova and Denver, two beautiful little girls living with Dravet syndrome.
Our journey with Dravet began with seizures, uncertainty, and more questions than answers. We quickly learned that Dravet syndrome is so much more than epilepsy. It affects so many parts of everyday life, bringing challenges that most people never see or fully understand. Both of my girls have Dravet syndrome caused by the same SCN1A gene mutation, and our family has experienced firsthand the fear, exhaustion, heartbreak, and constant advocacy that can come with this diagnosis.
But our story is about so much more than seizures and hospital stays. It’s about two little girls with their own personalities, interests, dreams, and joy. It’s about celebrating milestones, finding happiness in the little things, learning to navigate the unexpected, and discovering strength we never knew we had.
Warrior Princesses was created from our family’s journey with the hope of making sure other families don’t have to feel so alone. I want to share our real-life experiences — the hard days, the victories, the lessons we’ve learned, and the things I wish someone had told me along the way.
A Family Journey
Although I’m the voice you’ll hear from most often, I’m not the only one with a story to tell! From time to time, you may hear from Dad, Pop-Pop, and Meemaw, too. And who knows? We might even have a few special guests join us along the way!
Dravet syndrome has a ripple effect that reaches far beyond the child diagnosed. It touches parents, grandparents, siblings, extended family, and everyone who loves and cares for these incredible kids. Each person experiences the journey a little differently, and every perspective matters.
By sharing our family’s different voices, we hope to create a space where more people can see a little of themselves in our stories, feel understood in their own experiences, and recognize that they aren’t alone in navigating the challenges Dravet brings. Because this journey may look different for every family member, but we’re all in it together.
This is a place for honest conversations, shared experiences, encouragement, and learning. A place where you can ask questions without feeling embarrassed, share your struggles without fear of judgment, celebrate your child’s wins, and connect with people who understand the realities of life with Dravet syndrome.
I also believe that parents are powerful advocates for their children. Every child deserves to be heard, understood, supported, and given the opportunity to thrive. I hope our story encourages other families to trust their instincts, ask questions, seek answers, and never be afraid to speak up for their children.
Whether you are a parent who has just heard the words Dravet syndrome for the first time, a seasoned caregiver who needs someone who understands, or someone simply looking to learn more about this rare condition, you are welcome here.
We are the Warrior Princesses — and we’re so glad you’re here.
Together, we can raise awareness, share knowledge, build community, and remind every Dravet family that they are not alone.