In June 2015, Jeffrey and Sonya Shorr's third child, Bella, came into the world via an emergency cesarean section. As mom Soyna, now 40, was recovering, the doctors gave the family some unexpected news: Bella had spina bifida. She needed immediate surgery and there was a good chance she’d never walk.
“We were kind of selfish in our thoughts,” Jeffrey Shorr, 38, of Buffalo, New York, told TODAY. “We thought, ‘What did we do in our life to be punished?’”
Spina bifida is a congenital condition that prevents the neural tube around the spine and spinal cord from completely closing. That means children with this condition are born with part of their spine exposed. Within the first 48 hours, doctors perform surgery to close the opening, also called a lesion.
Bella, like others with it, also received a shunt in her brain, which drains excessive fluid in her head to her stomach for the body to re-absorb. Children born with spina bifida experience nerve problems from the lesion downward. The higher up the lesion, the less functioning they have from that point. Bella’s lesion is on her lower back, right above the buttocks. At first, it seemed like Bella's life would be very challenging.
“The doctors painted a pretty grim picture,” her father said.
After recovering from their initial shock, the Shorrs realized life with Bella was the same as with their other children.
“She is just like any other child, the smile, the interactions,” he said. “We thought spina bifida was a punishment at first, but it has been a blessing.”
The almost 2-year-old girl has defied doctors' expectations. Bella started crawling and simply dragged her legs behind her, like an army crawl. While that helped her move inside, she struggled to be mobile outside. She was stuck watching her sister, Gabriella, 8, and Maximus, 5, play.
Bella did not have a wheelchair. The few that exist are made for children around age 2 and older, and they can be expensive. While insurance might cover the cost of a chair, many companies want the wheelchair to last several years.
“Most insurances will only pay for a wheelchair expecting it to last a certain number of years. So, they won’t necessarily buy a replacement chair every year,” said Dr. Timothy Brei, medical director of the Spina Bifida Association. “Many of the children with spina bifida are mobile by crawling or scooting on the floors.”
While the family felt happy to see Bella move as well as she could, they wished she could play outside.
That’s when Bella’s aunt and uncle, Rebecca Orr and Marty Parzynski, found instructions to build a wheelchair from a Bumbo seat and stroller wheels. They asked Jeffrey and Sonya if they could try to make one for Bella. The family felt thrilled.
“That is exactly what she needed,” Jeffrey Shorr said.
When Bella started using it, the change was immediate.
“Bella was wheeling around the house and was able to go outside and [was] wheeling around outside,” Shorr said. “She could chase her siblings up and down the sidewalk when they were riding their Big Wheels.”
And the best part? It cost less than $150 for all of the parts and only took about four hours to make.
After seeing how Bella thrived, the Shorrs, Parzynski and Orr discussed whether they could make these for other children with special needs. Shorr knew that many families were in the same situation.
They started a Facebook group, Bella’s Bumbas, in February and immediately received responses. People donated Bumbo chairs and other hardware while people with children who needed wheelchairs requested them. A website, handicappedpets.com, donated two dozen sets of wheels, which provide better stability than the stroller wheels.
“The community has really pulled around us here,” Shorr said. “It’s all driven through donations.”
Parzynski builds the chairs and Shorr is running logistics and social media, but the entire family is involved.
“My kids actually just built one,” Shorr said.
They’re perfecting the design and can even make chairs for bigger children with a Mega Seat. They've handed out about 20 so far and have a waiting list of 23 people they're trying to fulfill. People do not pay for the chairs, though they do need to pay shipping, which ends up costing about $62.
People can visit a Go Fund Me page to make donations.
Shorr said this experience showed the family how something wonderful can come from adversity.
“We created a legacy with Bella’s Bumbas and we would have never been able to help other children without Bella’s diagnosis," he said. "We know firsthand the joy our chairs bring to kids and their parents.”