Our family’s journey with epilepsy began in 2020 when my son, Remington, was diagnosed at age eight. We weren’t sure why he developed seizures at first, but after seeing three different doctors and undergoing genetic testing, we learned he has Ring 20 and Lennox-Gastaut Syndrome (LGS). After years of medication trials and relying on rescue meds, Remington had a VNS placement in 2022. While that helped, he continued to struggle with dangerous drop seizures, leading us to a corpus callosotomy in 2024. Since that surgery, he has only had a handful of drops. It hasn’t been a “cure,” but it has been a total 180 for his quality of life, and we are now hopeful about weaning off some of his many medications. We have faced many challenges along the way, but together as a family we have remained strong.

I volunteered to become a Parent Support Navigator because, as a single mom of four, it was a scary and lonely time when I first found out about my son’s diagnosis. I had to research every medication and side effect on my own, often without the support of family or a network that understood our specific path. I just kept researching and researching. When I first reached out to the Pediatric Epilepsy Surgery Alliance, there were no parent supporters who had a child who had the same type of surgery Remington needed. Now that I’ve found my own outlets through friends, coworkers, and online groups, I want to be that support for someone else. My goal is to help other families who are going through the same obstacles that my son went through, listen to your concerns, and share the coping strategies I’ve learned. No family should have to walk this journey alone.

Languages spoken: English