Retirement may be a chance to relax, but Marty Parzynski and his wife Rebecca Orr have no intention of slowing down. Instead, their lives of this Webster couple took a dramatic turn when their great niece, Bella, was born with Spina Bifida in June 2015. “We were surprised. No one knew in vitro,” said Orr. “As she grew, the doctors saw no movement in her legs. She was paralyzed.” As Bella continued to grow, her struggle became more apparent. “She was frustrated because she couldn’t crawl,” Parzynski recalled. “When other babies would crawl away, she couldn’t follow.” It was Bella’s heartbreaking struggle that would become Parzynski and Orr’s inspiration.
Rebecca Orr began to believe there must be something she and Marty could do to help baby Bella be more mobile. She searched the internet and came across a blueprint for a softshell baby seat wheelchair. She showed the blueprint to her husband. “I worked it out,” says Parzynski. “I used a softshell infant support seat, 12-inch bicycle tires and constructed the whole chair in about three hours.” Bella was nearly a year old when her great aunt and uncle gave her this new mobility chair, and her reaction was nothing short of incredible. “Almost immediately, we saw what it did for her,” said Parzynski. “Her personality came out. Her happiness came out. We also saw what it did for her parents to see their little girl moving on her own. We couldn’t help but think, ‘What about the others?’”
Orr and Parzynski decided to test the waters. “We put our chair out on Facebook,” said Orr. “People began asking for them.” “We thought maybe we would make 20-30 of these chairs,” Parzynski chimed in. “But requests kept coming in. We were scrounging for parts. Around the 10th chair, we established Bella’s Bumbas as a nonprofit in May 2017. We have now made 676 chairs, and it hasn’t been two years yet!” Parzynski explained that the need is great. Wheelchairs for children ages infant to five years old are often not covered by insurance as they are not considered necessary. Commercially, a very small child’s wheelchair typically starts around $800. “We don’t charge for our chairs,” said Parzynski. “Families with special needs children are very often strapped financially already. We just ask people to pay the shipping.” “Sometimes, shipping is even to great a cost,” added Orr. “We ship all over the United States, and we have shipped chairs to 26 countries worldwide as awareness continues to spread. Some families, when they request a chair, express that they cannot afford the shipping, and within days, someone will donate for just the shipping. People do fundraisers just for shipping. It’s incredible.”
As Parzynski’s mobility chairs, Bella’s Bumbas, are making their way into more and more homes and countries, others are also taking up the cause. “We have two designated volunteers in other countries now: one in Indonesia and one in Malaysia,” said Orr. “Wahyu Widayati, our Indonesian volunteer, made a presentation to the local Rotary and gained approval for half the shipping cost for 10 chairs to Indonesia.” Parzynski shared another story in which, about a year ago, a family in Germany needed a chair, but the cost of shipping was prohibitive. So, the child’s grandfather asked if he could make the chair himself. Parzynski and Orr sent the blueprints and notes back and forth via the internet, and the man was able to build the chair on his own. Now, he has established a similar nonprofit in Germany called Lena’s Rollies, and that nonprofit is also filling requests for mobility chairs.
As Parzynski and Orr are approached with the new challenges of families with children in need, Parzynski continues to develop new adaptations, and the chairs continue to evolve. “We started out with a softshell model,” said Parzynski. “We moved onto a hardshell and made a few different sizes. We now have 6 different models. I have recently invented a chair that can be moved and steered with one hand. I’ve created extensions so that they chair can be used longer. We also make little trailers.” Parsynski described a chair request for a child with Caudal Regression for which the child’s grandmother sent in a special seat to be crafted into a mobility chair. Since then, Parzynski has received more requests and created more of these chairs. While every child and chair are memorable, there is one child that quickly came to both Parzynski’s and Orr’s minds: Brooklyn.
“I think Brooklyn stands out because her chair was our first challenge,” said Parzynski. “Brooklyn was on oxygen and feed pumps. She couldn’t be detached from them. So, we created a chair with a longer base and a basket on the back to hold these necessary items. Then, she was able to just move around on her own.” Parzynski and Orr explain that It means so much to these children to be able to move for themselves. They are so excited. For the parents, it is so often the little things like knocking things over and playing hide and seek, things most people take for granted, that are so meaningful. Parzynski mentioned a dad who sent Bella’s Bumbas a thank you note because it was the first time his son was able to participate on an Easter egg hunt for himself.
Even with the outpouring of gratitude and being on CBS, Channel 8’s Extraordinary People, Spectrum Live in the Morning and a recent interview by KLOVE, Parzynski and Orr remain humble. “We just made a device for mobility, that’s all, but here’s what started to happen. Bella was told she would never walk, now she is looking at a walker because her upper body has become so strong using her chair. Children on oxygen are seeing decreased dependency at times because they have built up their lung capacity,” said Parzynski, and he admits they couldn’t do it alone. “We are so grateful for those who volunteer with us.” He introduced George who claims his wife Carol left him on the doorstep, but Orr says George and Carol never miss an event, Dee one of Parzynski’s fellow Xerox retirees who says he was so impressed with Bella’s Bumbas that he is once again working with Parzynski who he says is an engineering genius, Spencer who belongs to the Webster Rotary and was so impressed with Parzynski and Orr’s presentation that he decided to volunteer himself, also Bonnie who helps with packaging the chairs and a niece who helps with accounting.
Going forward, Parzynski and Orr see a need for more volunteers and greater support. “We need to train volunteers to answer emails, work with families to determine what their needs are, handle paperwork, complete shipping and things like that,” said Orr. “We are working on this project 7 days a week and putting in over 40 hours.” Parzynski added, “At this point, we are looking for one or more corporate sponsors. Until now, we have been completely funded by donations and fundraisers. We need some means of support as we continue this very important work.”
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