Eisley’s Story

As told by her Mom, Nicole.

Eisley was born on September 3rd 2022, reaching milestones, and growing as expected, one day I noticed she was doing this “tremor” motion and some slight changes in her interests. The “tremors” became more consistent so I immediately got her into the Pediatrician to see what it was, and they quickly said this is not normal get an EEG asap, with referrals to a neurologist and that’s when we found out what Infantile Spasms were and what ultimately started Eisleys epliepsy journey and how we later found out she has a malformation in her brain called Focal Cortical Dysplasia.

Eisleys IS was late onset, she was 15 months old when she started showing signs and 18 months old when she was officially diagnosed. Immediate intervention when we started realizing something was off is what helped save her and get her the treatment she needed to help. As we were trying to control IS (which we were able to) she developed other seizure types, myoclonic, focal, and absent. Unfortunately because of FCD she was becoming extremely medicine resistant. She was able to be a candidate for a frontal disconnection and minimal resection surgery, which we had performed on October 31st, 2024. Unfortunately right before her surgery, August 25th 2024, a day that will forever be etched in my brain, was the turning point of a downward spiral, Eisley had an episode so big it landed us in the hospital immediately, and in the moment there was no telling what the outcome was going to be, thankfully we were able to bring her out of it, however from that moment on her seizures  were so frequent she was probably having up to 200 a day with no breaks. Weeks leading up to the surgery her seizures were becoming more and more intense with little to no freedom and many hospital stays just to help control them enough to give her brain a break.

She is currently 8 months post surgery and Eisley’s personality is shining so bright, meeting new milestones and gaining confidence back. Her strength and resilience is truly amazing and extremely inspirational! Just an almost 3 year old out here living her best life now.

Her journey has taught us how quickly life can change, and how being an advocate is so so important and how powerful your voice is, speaking loud is exactly what we will do and will continue to do to help other parents find the resources and communities they need to navigate this world we call … epilepsy. 

Kind words you would like to share with a parent or someone newly diagnosed:
Finding your people and support system is so important, you’re going to feel scared, and have feelings you’ve never felt before but they are completely valid. It’s okay to grieve the picture you had in your head of how things were “supposed” to go. But also, give yourself credit—you’re already doing something powerful: showing up, learning, and loving fiercely, but most of all you’ve got this!

Connect with Eisley’s Mom, Nicole:
Instagram: @nikimarie_hair 
“I would love to be your friend! We’re in this together!”