Shaler woman creates Hannahtopia, selling EEG caps called NillyNoggins

Heather Shuker, 49, is a mother who knows fear — she’s felt helpless as she’s watched her daughter, Hannah, battle severe intractable seizures for the past 20 years.

Hannah has seen the inside of a hospital more than she’s seen the inside of a high school. Despite doctors telling Shuker that her daughter may not live to be a teenager, Hannah will be celebrating her 21st birthday later this year.

Shuker, of Shaler, said that throughout her life, Hannah has experienced more than 100,000 seizures, and doctors have been unable to find or diagnose the cause of them. In 2017, she began at-home instruction after the seizures, medications and the underlying disease led her to need 24-hour care.

Shuker has supported her daughter during every step of treatment, and in an attempt to help a situation that is mostly out of her control, she created Hannahtopia, a business that specializes in selling electroencephalogram (EEG) caps that she calls NillyNoggins.

“An EEG can be very scary, especially for children,” Shuker said.

Traditionally, a person getting an EEG has their head wrapped in white gauze and tape. Then, wires are pasted to the patient’s scalp to get readings from the procedure. The procedure can range from one to four days. Due to epilepsy treatments being in-patient and out-patient, patients may have to leave the hospital with the gauze and wires still attached to their heads, leaving them feeling exposed or possibly insecure.

Shuker’s NillyNoggins are reusable, sewn, colorful caps with different patterns available. The wires can be tucked inside if the patient needs to keep them on for multiple days at a time. Shuker said that the caps also give the patients a little bit of control over their experience by being able to pick the cap that they wear.

“They create comfort and conversation for the patients wearing them,” Shuker said. “A lot of times when people see kids with gauze wrapped around their head, they avoid them. (NillyNoggins) bring the child wearing them confidence.”

Kate Kostolansky, 33, a mother based in Exeter, New Hampshire, said that she saw an improvement almost immediately when her 3-year-old daughter, Charlotte, wore her NillyNoggin for the first time. She called it a complete “game changer.”

“You could tell there was a change in her confidence and her comfort,” Kostolansky said.

Charlotte was diagnosed with epilepsy about a year and a half ago and immediately began treatment. Kostolansky said that she would never forget the first time she saw her daughter wrapped in white gauze with wires attached to her scalp.

“It was horrible,” she said. “Charlotte was very young when she had to start getting EEGs. It was probably more traumatizing for me to see than for her to get the procedure. I think the NillyNoggin humanizes the process in a way.”

The caps are made for all ages, and depending on who’s getting the EEG, they can completely replace the makeshift gauze cap. Shuker said that if patients are more likely to sit still during the procedure, then they don’t have to wear the gauze.

Shuker decided to start the business in 2017 when her daughter went into respiratory failure. As she sat in the hospital by Hannah’s side for 13 days, she began to brainstorm about how to make this experience better for her daughter. She thought of a name for her caps.

“It can just be so sad when you live with severe epilepsy,” Shuker said. “I wanted the name to be fun and I thought of ‘nilly.’”

When Shuker looked up the word, she found that it meant “angelic child”

“It was perfect because these little warriors that battle epilepsy are so strong and they are little angels,” she said.

In 2018, Hannahtopia officially began business. Shuker is partnered with SewForward, a nonprofit based in East Liberty that specializes in small batch, cut and sew manufacturing. SewForward produces the NillyNoggins while Shuker runs the business, and makes connections with hospitals and individuals across the nation.

In the past five years, NillyNoggins have been successfully tested by neurologists, featured in conferences and have entered hospitals around the country, including Boston Children’s Hospital, VCU Children’s Hospital, Joe DiMaggio Children’s Hospital, Duke Children’s Hospital and Health Center, Peyton Manning Children’s Hospital at Ascension St. Vincent and Oishei Children’s Hospital.

“It’s been a tremendous challenge bringing a new niche product to hospitals because of their budget constraints,” Shuker said.

She said that NillyNoggins are on the wishlists of a few different hospitals, including Children’s Hospital of Pittsburgh and Penn State Hershey’s Children’s Hospital, but they can’t afford them without donations of sponsors. In response to this problem, she started the Hannahtopia Foundation.

Through the foundation she has started the program NillyNoggin’s Across the Nation, which allows individuals and corporations to sponsor children’s hospitals across the country and answer the wish list requests. Kostolansky’s daughter was able to receive her first NillyNoggin from Boston Children’s Hospital through this sponsorship.

“I think it’s really special that we discovered the caps because someone donated them,” Kostolansky said.

She has also started Warrior Troop Boxes — each box includes a NillyNoggin, a gold medal, stickers and other items that will help boost a child’s mood. Corporate sponsors can choose to sponsor warrior boxes and they are sent to individuals with epilepsy. Patients can also join the program as a “warrior troop” and fundraise for their own box. Shuker said that even if they don’t raise a lot of money, they are still guaranteed a NillyNoggin because if one warrior raises more money than they need for a box, the excess goes to another warrior who needs a little extra help.

NillyNoggins can also be bought individually for about $55 each, but Shuker created the programs for families who frequent the hospital and may be stretched thin after medical bills.

“Another reason that I started the foundation was that I know that sometimes people can’t afford something extra,” she said.

Outside of Hannahtopia, Shuker works with a small skilled nursing consulting company, and as a business manager at an assisted living facility.

“Hannah is my number one priority and having to maintain that work-life balance is difficult,” she said.

Shuker said that the families that have received or bought NillyNoggins have stayed in touch since they found Hannahtopia.

“It’s really become a support group,” she said. “Just to know the NillyNoggins are helping them get through their EEGs is just really an honor.”

She said that they contact each other mostly at night — parents of children with epilepsy find it hard to fall asleep because seizures commonly occur between 8 p.m. and 8 a.m.

“So many parents are thrust into the medical world with no sign that it’s coming,” Kostolansky said. “Anything you can do to provide your child comfort is important, including immersing yourself into the world by meeting parents and other moms who have been there.”

Kostolansky has created a company called Brave Bear that sells a book about pediatric epilepsy that she wrote in honor of her daughter, “Char Bear Keeps Dancing.” The books are sold alongside Wave the Brave, a stuffed bear dressed in a hospital gown that wears a traditional EEG cap. She and Shuker are currently collaborating to create NillyNoggins for the Wave the Brave to wear.

Shuker described the five-year journey of Hannahtopia as “truly unbelievable.” She has found a community full of love and support for those who suffer from seizures.

“We’ve lived this nightmare and we want to bring happiness to others who are living the same life,” Shuker said.