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.

Cassian was born with congenital heart disease, congestive heart failure and complex heart defects that were repaired with open heart surgery at 6 days old. Unfortunately he had some major complications following his heart surgery. Cassian spent a total of almost 4 months with a breathing tube and on ventilator support. When he was almost 3 months old Cassian started having seizures. We discovered he had hydrocephalus and he was also diagnosed with epilepsy. He ended up having brain surgery to place a VP shunt and started on medications to control his seizures. He was also diagnosed with pulmonary hypertension, diastolic dysfunction and feeding/motility issues. He ended up having several other surgeries and procedures, including a gtube placement and attempted tracheostomy. He was later able to come off ventilator support and come home at a little over 5 months old. After his initial discharge, Cassian has been admitted many, many times due to ongoing chronic health conditions. He’s had several medical procedures, EEGs, EKGs, numerous other testing and undergone surgeries frequently. Cassian also has hypotonia, is developmentally delayed, and was born with vision problems that required bilateral eye surgeries. When he was 1, we discovered through genetic testing that he has a rare genetic syndrome, called Kabuki Syndrome, that is associated with his health conditions and defects. Despite everything he’s been through and continues to go through, Cassian is a happy and energetic baby with a personality and smile that melts our hearts. He is constantly overcoming obstacles and brings more joy to our lives than we ever though possible.

Cassian M.

by Heather Shuker

  • $40

    Funding Goal
  • $95

    Funds Raised
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Heather Shuker

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Name Donate Amount Date
James McCrary $40 January 23, 2022
Paige Visintin $5 January 23, 2022
Anonymous $40 January 23, 2022
DELORES FLANDERS $10 January 23, 2022