Short Story

I am on the Waiting List for my NillyNoggin EEG Cap. It will help me during my EEG testing! Please help me reach my goal.

I am so excited to receive my NillyNoggin!

And an added bonus,

if I go above and beyond my goal, we will help other Warriors battling epilepsy! How?

Once I reach my goal of $50, every $50 over that will support other Warriors wishing for a NillyNoggin!

I would really like to help others battling neurological conditions. I know what its like to fight every day and having something to help us get through stressful testing with a smile and help us feel like a rockstar is priceless.

Let’s work together and help sponsor NillyNoggin EEG Caps for more warriors battling epilepsy!

My medical condition requires me to get EEG tests that are very medically sterile looking and often scary.

Sometimes an EEG is worn for days, in public, and people often stare. The NillyNoggin covers up this scary medical look. It puts a positive, happy twist on the EEG procedure that some of us have to get a lot.

The NillyNoggin cap is comfortable and colorful! Lots of people will come up to talk with me ’cause it’s so cool! It will also give me confidence and comfort! This cap will help ease my anxiety and make life easier on everyone involved with my care.

As a mom, nothing prepared me for hearing the words “Your son just had a seizure.” or “Your son has epilepsy.” Nothing. And that is exactly what happened in December of 2021. Sebastian is my youngest of 3 sons. He is a sweet, funny, caring, and VERY charismatic boy. The morning of December 17th I was awakened by a phone call from my ex-husband Sebastian’s dad saying “Kayla, our son just had a seizure. We are taking him to the ER, meet me there.” The ER doctors tested him for everything they could think of, but it all came back fine. I was terrified and baffled. How could this be happening to our sweet baby? He was completely fine just the day before. Advanced for his age, thriving and excelling in pre-school. And because it was his first seizure he got sent home and we were told to watch him close. We had no experience and absolutely no knowledge of what to do for him or how to help him if it happened again. Not even 8 hours from the first one, Sebastian started having another full body seizure in his car seat as I’m driving through the pick up line to get his oldest brother from school. I immediately pulled into the school parking lot and checked on Sebastian, talking to him telling him that momma was there and telling him to come back to me. He came out of it, tried to say he loved me but couldn’t get the words out of his mouth and was frustrated, and then after a minute he passed out. Scared to death, I call his pediatrician. She sends us to Arkansas Children’s Hospital. Sebastian was admitted and had all sorts of scans and tests done and for a 3 year old who didn’t understand what was going on, it was scary. The next morning we get the diagnosis of “Generalized Epilepsy”. Due to the epilepsy, Sebastian has had to re-learn things due to a huge decline in his development. Things like re-potty training because he started having accidents when he used to be in undies all the time and no accidents, re-learning how to speak words more clearly to do having a major issue with stuttering after a seizure, and multiple therapies for his physical strength. He was in a small private pay preschool program and they didn’t have the means to train/educate the staff on how to care for a child with Epilepsy and didn’t have a nurse on duty to help keep an eye on him or administer rescue medications when needed, so I made the decision to stop working and stay home with him full time. Since the diagnosis, he has had several hospitalizations, several medication changes (5), countless tests, and numerous appointments to the genetics clinic and neurologist. His current, and slightly more pin-pointed, diagnosis is “myoclonic astatic epilepsy” and his is a severe form and has shown to be medication resistant. The new medication that we started him on in July has kept the seizures under control, but there is still the concern that he is still having some. Because of that, Sebastian goes in November to get a 48 hour EEG. Despite everything that Sebastian has gone through in the past few months, he has remained strong and positive. He amazes me every single day and I am so unbelievably proud to be his momma.

Sebastian S.

by Heather Shuker

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Heather Shuker

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Name Donate Amount Date
Guy Whitfield $50 October 31, 2022