Making a positive, happy difference in the life of a child living with epilepsy is my passion.
How I Got the Idea for a NillyNoggin® EEG Cap
My daughter, Hannah, has been through many many EEG’s. They always cause anxiety, stress, and mad times.
As I sit beside her during each and every one of these EEG procedures, I have always thought:
“How traumatic it must be as a child to have this procedure.”
Now don’t get me wrong, the procedure itself does not hurt.
It’s the process of getting the EEG test set up, having wires hang from your head, and then having your head wrapped in gauze and tape.
It’s a visually terrifying experience, especially for young children, those with developmental delays and autism. Many children with epilepsy face developmental delays as a result of the damage to their brains from repetitive seizures.
Oftentimes, Hannah was wrapped in a papoose and/or strapped down for her safety while the EEG technician applied the electrodes to her head. She would get herself so worked up as a result that she would fall asleep halfway through the application of the leads due to sheer exhaustion.
How to Help Kids Who Get EEG Tests?
Each time Hannah had an EEG test, I sat and wondered:
“What can I do to help Hannah, and all the other children that required this procedure?”
470,000 children in the United States have epilepsy – defined as two or more seizures. All of these children receive EEG tests and often over and over throughout their life. The need is enormous.
A Very Difficult Time
Then, in May of 2017, Hannah went into respiratory failure.
We were in the ICU for 10 days.
During that time is I decided, once and for all, I was going to do something with my desire to help children suffering from epilepsy.
Coming up with the NillyNoggin EEG Cap!
The basic concept for the NillyNoggin EEG Cap was in my brain.
I was not quite sure what the final design of the cap would look like, or how to create it, but I did know a few things that were absolute requirements for this product:
It had to be colorful, comfortable, snug, light and breathable, and functional.
- Colorful because colors create a sense of happy.
- Comfortable … because, well … who wants to be uncomfortable?
- Snug to help protect the leads.
- Light and breathable to help avoid overheating and therefore sweating.
- Functional so that EEG technicians would have easy access when a lead malfunctions and so it is as easy as possible to put on. I did not want to make the job of the EEG technician more challenging … I wanted to make it easier which in turn might help reduce stress for the children.
And Then There Were Prototypes in Development!
I got to work. I reached out to friends to see if anyone knew of a seamstress that would be interested in helping with this project.
A woman local to me in Pittsburgh, Pennsylvania was interested and was very helpful with the first round of prototypes. But I was not convinced the samples we produced were exactly what I envisioned as the final product. I stepped back a bit and let my ideas process.
And then I decided to take sewing lessons! To see if I could come up with the design I was looking for.
After six weeks of sewing lessons I had what I needed!
Now you need to know that I am not an avid sewer. But, I can sew a NillyNoggin EEG Cap! I might be rethinking my whole career path in life … because I discovered that I do have a love for sewing!
Hannahtopia® is Born – NillyNoggin EEG Caps Available to Purchase!
In January 2019 Hannah and I launched Hannahtopia. A cornerstone of everything we do is producing NillyNoggin EEG Caps. We’re so excited to see the SMILES on children’s faces as they receive and wear their NillyNoggin EEG Caps!
Each photo we receive from parents shows us that NillyNoggin EEG Caps are making a real difference in the lives of children who face some pretty significant medical challenges.
As a mom of a child with epilepsy, and a friend to countless children with epilepsy and their parents, I feel so strongly the need to make a difference in childhood epilepsy. To bring color and happy to the day-to-day lives of these children and their families. And to make challenging tests and procedures, like the EEG, easier for them to endure.
Our mission now – Hannah’s and mine – is that every child who needs to have an EEG procedure will also have the option to wear a NillyNoggin EEG Cap. We’re excited to be working with children’s hospitals, epilepsy centers, and epilepsy organizations across the United States! We’re on this journey together!