Jeffrey and Sonya Shorr of Buffalo, New York, found out their daughter had spina bifida just an hour after being born via an emergency C-section.
“My initial feelings were those of anger and sadness,” Jeffrey tells Babble. “I felt as if we were being punished by God for something we had done. I know those feelings were selfish, but that’s honestly how I felt.”
No one expects their child to be born with a birth defect, but after the shock wears away, you learn how to move forward.
The Shorrs quickly read up on what exactly spina bifida entails — spina bifida is a birth defect in which the child’s backbone does not form properly around the spinal cord, leaving a part of the spine exposed — and had to send their newborn daughter Bella into emergency surgery.
Now, almost two years later, Bella is not able to move the lower half of her body, but her parents have tried to make her life as normal as possible.
Still, getting around on her own and playing with her older siblings Gabriella, 8, and Maximus, 5, proved to be a challenge. That is until Jeffrey Shorr’s aunt and uncle came to him with an idea.
Finding instructions online, Shorr’s uncle Marty Parzynski offered to build Bella a wheelchair using a Bumbo seat and stroller wheels. Being a former mechanical maintenance specialist, Parzynski had no problem putting it all together — and it only costed $150 to make.
Commercial wheelchairs are often very expensive (ranging from $2K-5K), and the Shorr’s insurance, like many other families’, only cover wheelchairs every five years. And when you think about how much a kid grows in those early years, having one wheelchair last that long is a bit unrealistic.
Enter: Bella’s Bumba.
Parzynski made several improvements to the initial design to make the wheelchair strong and safe, even adding a brake system, not unlike those found on a full-size commercial chair.
And after presenting the handmade chair to Bella, it only took a few days for her to grow accustomed to her new mode of transportation. Within weeks, she was wheeling around freely.
“I think her quality of life was drastically improved once she received the chair,” Shorr tells Babble, “mainly because she had freedom to go where she wanted and could interact with her siblings much easier.”
Bella wheels around both at home and in public, as Shorr makes a point not be shy about Bella’s disability. And when it comes to those unwelcome stares from strangers, Shorr offers some advice to other parents going through the same thing:
“Don’t worry about stares or snarky remarks made by others in public,” said Shorr. “They would never be able to walk in our shoes and accomplish what we do. In the end, it’s about our children and our love for them, not what others think.”
In addition to playing around with her siblings, Shorr says that Bella was also able to go to a splash pad at one of their local parks — a simple childhood joy Bella’s parents feared she’d never be able to experience.
Not only has the handmade wheelchair improved Bella’s quality of life, but Shorr hopes it will teach his daughter an important lesson as well.
As Shorr tells Babble, he wants to teach Bella that “anything is possible with hard work and dedication, and that adversity is just part of life.”
But wait, this story gets even better because after seeing the success of Bella’s Bumba wheelchair, the family was inspired to share their product with others as well — cost free (with the exception of shipping).
By creating a public Facebook page and a GoFundMe page, Shorr began collecting donations for “Bella’s Bumbas” (to cover the cost of parts) in order to continue to provide wheelchairs for kids in need.
Having only started the initiative this past March, Shorr and his family have made over 20 chairs for children across the country and have 30 more on the waiting list.
“The joy that it brings to Bella was really the driving force,” Shorr describes as the motivation to make wheelchairs for other kids with special needs. “We just knew that the kids who receive a chair from us would experience the same feeling.”
If you’d like to donate to Bella’s Bumbas, feel free to visit their GoFundMe page.