From Webster: Helping Kids with Disabilities Around the World

The tiniest of special wheelchairs — Bella’s Bumbas — produce massive opportunities for kids with any type of mobility challenge

By John Addyman

Rebecca Orr is a woman who relies on her ability to take action, especially when it comes to helping someone else.

The test came in 2015. Her niece gave birth to Bella.

Happiness.

But Bella had spina bifida.

This cute-as-a-button cherub might never walk and was facing a life of other uncertainties and improbabilities.

How could Orr help her grand-niece? What could she possibly do?

The internet and Pinterest provided a clue — a special type of Bumbo seat (made in Cape Town, South Africa) attached to a roller frame.

A year later, close to Bella’s first birthday, Orr gave the plans for the rolling child’s chair to her husband, Marty Parzynski. That handoff birthed a nonprofit business: Bella’s Bumbas.

Orr and Parzynski have since produced 2,600 Bella’s Bumbas and sent them to grateful parents and enthusiastic kids in 65 countries around the world. No one pays for their Bumba, but the new owners are asked to cover the shipping.

And what the couple — Orr, 60, and Parzynski, 71 — has accomplished is to feed the spark of independence that lies waiting in every child with a disability.

“We never expected it to become what it has become,” said Orr, sitting in the kitchen of the house next door that has become headquarters for Bella’s Bumbas on Webster Road in Webster.

“This is a labor of love,” she added. “We’re meeting a need. None of us get paid. It’s all volunteers and we’re 100% supported by donations.”

A Bella’s Bumba is a rolling introduction to freedom for many severely disabled kids. Orr ticked off the major conditions — cerebral palsy, spinal muscular atrophy, Dandy Walkers Syndrome (very similar to cerebral palsy), bilateral tibial hemimelia, arthrogryposis multiplex congenita (CMA: joints frozen at birth), neuroblastoma — “and several of our children have multiple diagnoses,” she said. “We’re serving kids with more than 70 conditions.”

Delivering Mobility

What the Bumba platform delivers is mobility. Orr recites case after case where a Bumba made an enormous, and often surprising, difference in a child’s life — kids whom doctors said would have to be pushed around in a stroller their whole lives, now are scooting on their own and doing figure-eights in their Bumbas.

The success of the company goes beyond the fact that the Bumbas are free and many are individually modified for the problems a child faces. Parents faced with caring for a child quickly find out that the cost of expensive wheelchairs is not covered by insurance. A free, individually designed, forget-the-insurance-issue Bumba is a godsend.

Does a child need to have a feeding tube? Bella’s Bumbas has a model with a basket on it.

There are soft Bumbas and highbacks and those with two leg stages. All have benefited from Parzynski’s superior skills.

“I’m the brains of this outfit,” said Orr. “Marty knows better how to make something work that I think up. He went to school to be an aviation mechanic. He became a master mechanic of anything and everything you can think of — cars, farm equipment, diesel equipment — he was a maintenance mechanic at Xerox for a long time. He’s one of those amazing people who, if it can’t be fixed, if he needs a special tool, if he needs a part that’s obsolete, he’ll make it.

“He works on old farm equipment for a couple of farmers he does outside work for. Those parts become obsolete and he’ll either make them or make the tool to fix what’s not working.”

“Whatever it takes,” he said. “I want nothing left broke. Some of the equipment I’ve got on the farm is just so obsolete — replacement is just too expensive, but on the farm when something’s broke, they need that machine. I gotta get it up and rolling. I do a lot of that.”

‘Amazing Volunteers”

For Bella’s Bumbas, ‘Uncle Marty’ explained that Bella was indeed the light that started the company.

“We made the first one from the plans Rebecca found on Pinterest. That first one took four hours. Now we can make them in 30 minutes,” he said. “By our 10th chair we were modifying the plan, just to make the chair work better, changing the axle location and the type of seat, the type of casters. Now we make changes that depend on the type of disabilities of the child who need a chair.”

“We made a lot of alterations,” Orr explained. “We put baskets on the back for some children who have small portable devices, like small bottles of oxygen or a feeding pump. Some of the kids have traches so they need a suction machine available to them. We also made a ventilator trailer so if a child is on a ventilator, they still want to roll and be independent, so the ventilator sits right on the trailer — like a little tractor trailer for kids.

“Kris is in Buffalo. He had the first ‘Kris Kart,’ made for him. He did a roll to raise awareness of spina bifida. He wanted to do it on his own; he didn’t want anyone to have to carry a 40-pound ventilator behind him. He wanted to do it. We made him his ventilator tray. There were a whole lot of tears that day.”

Inside the workshop, Parzynski — also known as “Sarge” — is part instructor, part foreman and part engineer and designer.

“We have some amazing volunteers,” Orr said. “A lot of them are retired. Some are close to retirement. We have younger kids who come help us, including our second Eagle Scout. During the pandemic, kids who couldn’t go to school would come over here and help us build chairs.”

‘We’re meeting a need’

Orr’s background is of the Heinz 57 variety, she said.

“I never finished school. When I finally got myself together and figured out what I wanted to do, I did some child care, some general HVAC contracting and I was a single mom for nine years so I did a lot of non-traditional work to be flexible with my time for my kids. I was also an Army wife — I love those years. We spent a lot of time in Germany. I managed the A-plus Sunoco here in Webster. I sort of semi-retired when I had cancer.”

She and Parzynski married in 2006. In their modest Webster neighborhood, she got to know everyone.

“I took care of the lady who lived next door in what is now our headquarters,” she explained. “After her husband died, we started mowing the lawn for her, doing this and that, it just grew into a family sort of thing. The more help she needed, we just kind of did. We helped her stay at home as long as, possible. She was always a part of my kids’ lives because we lived next door.

“When she had to move to assisted living, she wanted Bella’s Bumbas to use her house as the workshop. When she passed away four years ago, her children said this is what mom wanted and dad would have approved, so we treat the house as our own. They still own the house but we maintain it as if it were our own. We pay taxes and insurance on it. Some day when they’re ready, we would like to buy it.”

The workshop is functional but tight. Parzynski has spread out into other rooms for his production areas. With volunteers of a certain age mixed in with high school robotics team members and visitors dropping by on a Saturday morning, Bella’s Bumbas is a very noisy, friendly place where things are getting done.

“It’s a labor of love: we’re meeting a need,” Orr said, standing in the middle of all this.

In October, a Bumbaleer — a mom whose daughter has a Bumbas chair — was in London, helping clear three Bumbas through Heathrow Airport on their way to India. It was a success years in process and Orr and Parzynski were very grateful.

“You thank me?” the woman wrote. “Every day I watch my daughter go to school because the independence she has in her Bumba chair shows how strong she is. You thank me? My daughter just got approved for a wheelchair over a year and a half early because she wants to independently self-propel. I was told my child would have to be pushed on a stroller her whole life. You thank me? Every day I see her little tiny arm muscles and amazing head control from pushing herself around all day. The real question is, how do we all thank you?”

 

Funding the Nonprofit. You Can Help

Bella’s Bumbas operates with an annual budget of about $75,000 and is grateful for donations through www.gofundme.com/bellas-bumbas, www.bellasbumbas.com, www.facebook.com/bellasbumbas and bellasbumbas@gmail.com.

 

“We spend what we’ve gotten,” Rebecca Orr said. “It’s all up to God how long we keep this going.”

The Bumbas inspire confidence and bring happiness not only to children, but to their families. Personalities emerge and flower. Smiles are a lot easier to come by.

“Whenever we’re tired and we’re done with the work and our funds are low and I’m thinking we may have to close the door, we think about what we’re accomplishing,” said Orr. “One of Marty’s ways of looking at our work is that he sees children trapped in their bodies. If no one gives them an out, they’re never going to get out. We have some children who were barely verbal who, within a couple of weeks after receiving their Bumba chair, they’re singing. One of our Bumbaleers is now a regular classroom dancer.”

 

Help from Charles Finney School Students

On a Saturday in mid-November, the robotics team from Charles Finney School in Rochester was at Bella’s Bumba in Webster to help with their coach Larry Latone.

 

“We build a robot that competes, but it doesn’t help anybody,” Latone said. “The robotics helps our kids learn how to be engineers. But here at Bella’s, the kids can actually see that we’re doing something good here. We spend thousands of dollars on a robot, but come here, and we probably get more gratification than building a robot.

“It’s putting our work into practice. Marty and Rebecca [Orr] have graciously allowed us to bring our kids here where they can learn to use these tools. They’re learning there’s more to building robots than just having fun. Do something greater than what you’re doing — do something to help people out. It’s a good service project for the kids.”