Many families in difficult positions ask themselves, "Why us?"
The Shorr family has their answer.
What began as a project to give their infant daughter freedom to roam despite her spina bifida has turned into non-profit organization Bella’s Bumbas, which has built and sent nearly 300 wheelchairs to five countries and 42 states, at no cost except for the shipping.
26 Shirts is proud to be offering "Toldozer" for the next two weeks in order to support the honorable efforts of Bella’s Bumbas.
After a seemingly normal pregnancy with no indication of any abnormalities, Isabella Shorr was born through an emergency C-section in 2015 and diagnosed with spina bifida, which happens when the spinal column does not close all of the way while a baby is in the womb.
According to spinabifidassociation.org, eight babies are born in the United States each day with spina bifida "or a similar birth defect of the brain and spine."
With his wife still under anesthesia, Jeffrey Shorr found himself alone and learning every detail of a lifelong problem for his beautiful new baby. Once Mom awoke, he had to tell her. It wasn’t easy: There were tears, anger, and questions.
"We always asked, ‘Why us? What did we do?’ Then we came to the realization that it was just a challenge, a bump in the road. She's cognitively normal. She smiles and is just a joy to have like our other children."
After almost two months in a neonatal intensive care unit, Bella arrived home as a happy baby with a tough road ahead. She’d need surgery to correct the part of her spinal cord on the outside of her body.
"We had a tough time with her moving around, she couldn't crawl. As she aged, we saw that she was trying to," said Jeffrey Shorr.
Baby wheelchairs are remarkably expensive. Shorr says they run anywhere from $1200-2000 out of pocket, and insurance companies rarely cover the cost.
Add in the varied other expenses that hit families with a disabled child, and the expense can be overwhelming. So Jeffrey’s Uncle Marty asked if he could try to build a device to help Bella move around and develop her muscles.
A few days later, Jeffrey’s uncle and aunt took Bella and her siblings to a splash park in Rochester.
"They had the chair and at first she sat in it and wasn't moving around at all, but by the end of the week she was everywhere, at the splash pad, rolling around with the kids, interacting, you could see the smile on her face that she was able to move around without army crawling everywhere."
Isabella, 2, is the youngest of three. Gabriella at 8 is the oldest, and brother Maximus is right in the middle at five. The freedom for Bella was one thing, the newfound fun for the whole family was another; Jeffrey marveled at the photos of his laughing children.
He says this summer’s been a big one for Bella and her personal Bumba, as Jeffrey's little girl is having as normal a summer as many other kids, even uncorking some surprisingly strong throws while in her chair.
"She's having water balloons with the neighbor kids, chasing kids up and down the sidewalk," he said. "Even though she's learning to walk now, she still can't run and chase kids. She couldn't throw a water balloon while trying to balance herself. In the chair, she can be a kid, and do what kids do. The freedom that it gives them is the big thing."
Jeffrey sold his business to stay home and tend to Bella’s needs, and now helps keep the bumba building in order. His story has been picked up by local news in Buffalo, and around the country including Disney, USA Today, and CBS News.
The cost for shipping a Bella’s Bumba inside the United States is a little over $60, and it takes the family about an hour to build one chair from start to finish. The organization accepts "donations in the form Bumbo seats, jogging strollers/bicycles (for the 12" tires), odds and ends hardware (nuts, bolts, metal for base mounts, etc), and even monetary donations that allows us to purchase items we may need to complete the chairs."
In doing this work, it’s given the Shorrs that answer to their questions. They were given the blessing a lovely young baby, who has already helped hundreds of children with similar obstacles.
"As we sit back and reflect it, this is absolutely the reason she was put in our hands," Jeffrey said. "My aunt and uncle are integral, and they wouldn't have done this if not for Bella. I would've never pictured myself being a part of a non-profit. Things happen for a reason, and I wholeheartedly believe this is the reason she was put on Earth, to help other kids. She's creating a legacy to continue with down the road."