Midwest Mom who will never stop advocating for the epilepsy community.
Whether you or a loved one is living with epilepsy, I want you to know you are not alone. Learning about an epilepsy diagnosis can feel overwhelming and scary at first, whether it’s for you or your child, but it’s also the beginning of understanding and finding the right path forward.
I know how hard this can be because I’ve been there myself. I had my first seizure when I was just six weeks old. Growing up with epilepsy meant facing challenges, from seizures interrupting my life to the uncertainty of how to manage them. After decades of trying different medications and treatments, I underwent left temporal lobe brain surgery two years ago. It was one of the hardest decisions I’ve ever made, but it changed my life. Now, I’m seizure-free, something I never thought I’d get to experience.
Epilepsy may come with ups and downs, but I promise it does not define you or your child. With the right care, support, and determination, you’ll find a way forward that works for you. My journey inspired me to write My Shaky World, a children’s book to help kids and families understand epilepsy in a way that feels empowering and hopeful.
Kind words you would like to share with a parent or someone newly diagnosed:
If you ever need someone to talk to, ask questions, or simply feel supported, I’m here for you. Even though living with epilepsy can feel tough at times, always remember that you are strong and brave; your light shines brightly, and each day is a new chance for adventure and joy!
I love hearing from people in the epilepsy community and sharing our journeys together.
Sending you hope, strength, and love!
Connect with Cassie:
My website www.myshakyworld.com
Instagram: @myshakyworld
Thank you Cassie for sharing your story and encouraging others, love Granny Becky