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.

Kayden had his first “episode” in November of 2019. He checked out fine at urgent care and the doctor wasn’t concerned because anyone can have one seizure. September of 2020, he had another seizure (three days after his baby sister was born) and he wouldn’t come to afterward. He got to ride in the ambulance for the first time and was back to his normal self about an hour after arriving at the hospital. He checked out fine at the hospital and was sent home with rescue medication.

Two weeks later he underwent his first EEG and a week later he was diagnosed with Generalized Epilepsy (meaning his entire brain is involved) and Tonic Clonic (grand mal) seizures. He was 3.5 at this point and we had no idea the journey we were embarking on.

Almost two years later, he’s had many more seizures (mostly during/around sleep). Epilepsy is so much more than just the seizures, though! It’s the twice daily medication given at a specific time, rescue medication that comes everywhere with us, medication side-effects, medication increases, adding medication, overnight hospital stays, EEGs, doctor appointments every three months, tiredness, brain fog, worry, teaching everyone who watches him seizure first aid as well as how to use the rescue medication, wondering if this new symptom is epilepsy-related, stuttering after a seizure, checking the camera every morning to make sure we didn’t miss a seizure, comforting a confused and upset child who wonders why this happened to him, trying to raise awareness, and the absolute rollercoaster of emotions.

Through it all, Kayden is so strong and never loses his fighting spirit and silly self. He’s great when it’s medicine time and doesn’t complain when we have doctors appointments all the time. He’s an energetic, silly, intelligent, inquisitive 5 year old who will not let Epilepsy stop him!

Kayden S.

by Heather Shuker

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Heather Shuker

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