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.

Lena is the only girl in a houseful of boys. When she was born, she was immediately dressed in sparkles and bows. Unfortunately within the first 24 hours of her life, her bows were traded for EEG leads. She began having seizures within hours of her arrival. During the first year of Lena’s life she battled with many different types of seizures, all very difficult to control and some very damaging to her little brain. After a year of constant EEG’s, concoctions of different meds, terrible side effects, and long hospital stays her seizures were finally controlled. Although Lena’s EEG’s always showed a tendency toward seizure activity, the actual seizures had ceased. Also within that first year, Lena was diagnosed with STXBP1 Disorder, a genetic disorder where the brain does not produce an important protein that helps to form synapses in her brain. There is no treatment. There is no cure. However by he time Lena was 3, she was able to be weaned off all of her meds and she remained seizure free. That doesn’t mean her battles were over. Lena is delayed in all areas of development. She can sit and crawl and we work hard toward walking but we aren’t there YET. She doesn’t have words YET but she sure finds a way to tell her story. She also works hard with OT, Vision, Developmental, and feeding therapists daily! She works hard every day to do the things most of us can do without even thinking about it! Unfortunately recently seizure activity has returned to Lena’s life. And EEG’s are still a dreaded, but necessary, activity. Through all of Lena’s battles, she remains the happiest, most loving little girl around. She is a light to all who have the privilege to know her and love her. She is #LenaStrong and she’s her mom’s hero.

Lena S.

by Heather Shuker

  • $40

    Funding Goal
  • $295

    Funds Raised
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Heather Shuker

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Name Donate Amount Date
Emily Sybesma $40 February 13, 2021
Dawn Frejkowski $25 February 13, 2021
Cassie Snedecor $20 February 12, 2021
Kristin Gigliotti $40 February 12, 2021
Michele Craig $120 February 12, 2021
Marifrances Kiebler $50 February 12, 2021