
Our journey began when my daughter started having what seemed like simple febrile seizures. They were prolonged, and over time she began having focal seizures that always progressed to status. Thankfully, they only happened once or twice a year, but each one was terrifying. Eventually, she was diagnosed with mesial temporal sclerosis (MTS), and at age 6, she underwent a left temporal lobectomy. She’s now 12 and has been seizure-free since surgery.
We later learned that those early febrile seizures likely contributed to the MTS, something we hadn’t understood at the time. Looking back, I wish someone had told us how important rescue medications can be or that an MRI should be standard when diagnosing epilepsy. Neither was mentioned early in our journey, and I believe both are essential.
That’s a big part of why I became a Parent Support Navigator. I want other families to feel informed, supported, and less alone. Whether you’re just beginning to explore epilepsy surgery or are already on the other side, I’m here to walk alongside you.
This journey is overwhelming, but there is hope. I would be honored to share what we’ve learned and support you as you navigate your own path forward.
Languages spoken: English