My daughter has lived with refractory epilepsy for 14 years, experiencing multiple seizures nearly every day and failing 14 different medications. After the first six months and multiple EMU stays, her diagnosis was changed to intractable epilepsy. The daily seizures, hospitalizations, and medication side effects quickly took over our entire lives. Due to diffuse activity and multiple locations of cortical dysplasia (temporal, frontal, and an area of PMG on the frontal lobe), she was not a candidate for resection or LITT. However, our journey has included nearly every diagnostic tool available, including sEEG, vEEG, MEG, SPECT, PET, MRI, and CT scans, as well as the Ketogenic Diet and extensive genetic testing. Eventually, she underwent DBS (Deep Brain Stimulation) implantation.

I volunteered to become a Parent Support Navigator because I distinctly remember how overwhelming the learning curve felt and how isolating it was to be her sole living parent. I desperately wished for someone who intimately understood the weight of these life-changing decisions, another parent I could be vulnerable with who knew what it was like to face seizures every single day. Having that support would have made an indescribable difference as I navigated the complexity and uncertainty of neurosurgery.

In addition to my work with the Pediatric Epilepsy Surgery Alliance, I am part of a similar support group at my local Children’s Hospital in Chicago. I want to be a shoulder to lean on for families entering this world, listening to everything you need to get off your chest. I am here to share what I’ve learned to help you feel more confident and empowered as you advocate for your child with neurosurgeons, school teams, insurance providers, and everyone in between. You do not have to navigate this world alone.

Languages spoken: English