Photo: The NillyNoggin is one of the products offered by Hannahtopia.
They say necessity is the mother of invention. Some local parents have taken that proverb to new heights by launching organizations and businesses driven by the unmet needs of their medically fragile children.
Unable to find a solution, these entrepreneurs created their own, then went on to help other families improve their quality of life.
Parents with children dependent on central lines, feeding tubes and ostomy pouches know that protecting those medical implements are critical to their kid’s health and well-being.
When Sarah Palya’s son went into intestinal failure, requiring a central line, she struggled to protect the device that was keeping him alive. Like most young boys, Gus, who is autistic and non-verbal, plays rough.
To safeguard the equipment (and to help her decompress from giving around-the-clock care), Sarah started making textile covers in 2011. The wraps, made of soft, supple fabric, lessened the risk of Gus accidentally pulling on or breaking the line. She shared her creations with parents of other sick kids who asked her to make more. Word spread and a business began to form.
Her ah-ha moment came when she got a call from a hospital. A nurse had seen a Gus Gear wrap on a kid in their clinic and wanted to order some for other patients.
Since then, Sarah has made more than 1,800 washable wraps and covers, available in a variety of sizes and colors. Gus Gear, based in Valencia, is available in 30 hospitals throughout the United States and Canada. Sarah and her team are now working toward helping families get reimbursed for the gear through insurance.
In the meantime, she attends national and local medical conferences, giving demonstrations and promoting her lifesaving products.
Today, Gus is 15 years old and doing great.
“He’s finally able to enjoy things,” Sarah says. “It’s the best quality of life he’s ever had.”
When he was just over a year old, Abram Morris was diagnosed with autism and began crawling out of his crib despite his parents’ best efforts to keep him safely contained.
The pint-sized escape artist would throw himself against his bedroom walls and toss toys around the room so that he could roll across the floor to retrieve them. He rarely slept.
His mom, Rose Morris, who was also raising a teenager and an infant, feared he would injure himself during his late-night activities. To give them all a rest, she invented the Safety Sleeper, a fully enclosed bed system, and created a new company, Abram’s Nation.
Made from medical-grade, fire-retardant fabric that stretches over a collapsible aluminum frame, the Safety Sleeper can be set up on the floor or placed on a bed frame. There are different sizes to fit different mattresses (including air-filled versions), with no areas of entrapment. The system is lightweight and folds into a suitcase for easy travel.
The device provides kids with a sense of security. Often, users will retreat to the comfort of their Safety Sleeper when they feel a meltdown coming on.
Abram’s Nation sells about 300 Safety Sleepers a year. Other products for kids with special needs include the Fidget Folder, a portable sensory board, and Wheely Capes, waterproof capes that protect kids (and their wheelchairs) from the elements.
Abram, who is now 14, sleeps longer and better thanks to his mom’s ingenuity.
The entire Morris family, who live in Hampton, is now enjoying restful nights.
“I needed that bed,” Rose says. “It was like air. I could not have survived without it.”
Throughout her life, Hannah Shuker has had more than 100,000 seizures. Diagnosed at a young age with epilepsy and Lennox–Gastaut Syndrome, she wasn’t expected to live past the age of 12. Hannah is now 16 and is 95-percent seizure-free thanks to medical marijuana, which is dispensed in oil form through her G-tube.
Her mother, Heather Shuker, spent many sleepless nights in hospital waiting rooms trying to figure out a way to make life a little better for her daughter and other chronically ill children. She watched as her daughter faced the terrifying sight of electroencephalogram (EEG) tests to measure brain activity when white gauze and tape was wrapped around her head like a mummy to protect the delicate electrodes.
She came up with the NillyNoggin, now sold through her company, Hannahtopia.
Kids wear the colorful, stretchy, breathable cotton-and-spandex cap during the EEG to cover the medical equipment.
NillyNoggins, available in different colors and patterns, minimize stress for kids during the procedure and allows the EEG technician better access to fix malfunctioning leads.
Hannahtopia has expanded its line to include simple and functional, yet fun products like pillowcases, blankets and G-tube covers made by other hospital-weary moms and dads.
Heather recently launched the Hannahtopia Foundation to help get products to families in need. Later this month, she’ll distribute 100 NillyNoggins, courtesy of Moe’s Southwest Grill, to Children’s Hospital patients.
Keeping costs down, she runs Hannahtopia from an office in the back of Pollack’s Candies, which is owned by her sister and brother-in-law. On Nov. 12, Hannahtopia will host an event there to give parents free legal advice on wills, trusts, estates and guardianship. A Hannahtopia party for medically fragile kids and their caregivers will be held on Dec. 14 from 2 to 5 p.m. at the Hampton Township Community Center.
Shopping for a kid with special needs? Heather has a suggestion.
“People mean well, but so often our kids get gifts they aren’t able to use,” she says. “Why not give them a gift card to Hannahtopia so they can purchase something useful?”
As a freshman in high school, Brandon Daveler dreamed of being a motorcycle mechanic. At age 15, a Motocross accident stopped him in his tracks. But only for a short while.
Quadriplegia didn’t prevent Brandon from finishing high school on time or earning an engineering degree from Penn State University.
After reading an article about the University of Pittsburgh’s Human Engineering Research Laboratories (HERL). Brandon applied to the master’s program. He graduated in 2014 and continued his doctoral studies there, becoming the lead mechanical design engineer on a waterproof motorized wheelchair called the PneuChair.
The PneuChair doesn’t need batteries or electronics. It runs entirely on compressed air and is fully submersible. It can go about three miles on one fully charged tank and takes just minutes to recharge. At 80 pounds, it is much lighter than a traditional battery-powered wheelchair.
While working on a PneuChair prototype, the team was approached by a representative from Morgan’s Wonderland, a 25-acre theme park for individuals with disabilities in San Antonio, Texas. They were interested in a mobility device for its new splash park. Today, Morgan’s Inspiration Island offers 10 PneuChairs to disabled guests free of charge.
As Brandon wraps up his PhD studies, he’s working to bring the PneuChair to the marketplace through his Pittsburgh-based company, Atimize Inc. Brandon is focused on improving the drive train and control system on the PneuChair and creating customized seating, so even those with high-level injuries, like his, can take a dip.
“It opens doors for people who want to experience water-related activities,” Brandon says. “There are alternatives, but they don’t really allow people to be independent.”