Oliver Bellant and his dad, David Bellant, pose with Oliver’s support dog Ringo.
PALM HARBOR – On Easter, 8-year-old Oliver Bellant stood up on the pool steps, and for his family, that was a win.
“It’s like dreams really come true,” David Bellant said, recounting his son’s words. “I told him anything you want can come true.”
When Oliver had his first fracture at 7 months of age, the Bellant family knew something about their son was different. It wasn’t until he was 16 months old they learned he had Osteogenesis Imperfecta, a rare genetic disorder also known as brittle-bone disease.
It literally translates to “bone making imperfect,” said Tracy Bryan, Oliver’s grandmother.
According to the Osteogenesis Imperfecta Foundation, OI is a gene mutation affecting bone formation and strength, as well as the structure of other tissue. It is a disorder that afflicts people their entire life.
Also, every case of OI is different. As for Oliver, his upper body seems not to be affected.
“My arms are really strong,” Oliver said.
His legs are a different story.
Oliver’s bone relies more on the equipment than his body. The bone doesn’t regenerate. In fact, a physician they took Oliver to said he was only the second of 38 patients he’s treated with a bone restoration issue.
“They are just puzzled,” David Bellant said.
His genetic code is both fascinating to doctors David Bellant said, but also frustrating because they can’t quite pinpoint the cause. They also not know why it’s just in his legs.
David Bellant said that in his right femur, most of the bone has started to go away.
In Oliver’s short life, he’s had over 60 fractures in his legs. Like many people with OI, Oliver lacks collagen in his bones, which creates elasticity. When he falls or gets touched the wrong way, he can easily acquire fractures.
Currently, Oliver has rods in his legs that go through the bone to support his legs. The rods can be adjusted and expand as he grows, but do require maintenance when he grows too much or he falls.
The end of last year was a perfect example.
In September of last year he needed his rods replaced, and due to pain, had to go into emergency surgery Dec. 29. He experienced mild breaks after that. After a long recovery, his friend Miles bumped his leg and the both felt a crack.
“It scared them both,” Bryan said.
In late March, Oliver had another cast removed after a tumble in his wheelchair.
Lately, Oliver scoots around the house.
“Up until this point, he’s been on and off walking,” Kelly Bellant, Oliver’s mom said.
Lately, he wasn’t stood up or walked at all. He doesn’t seem to use his walker as much either.
“I have to carry him,” Kelly Bellant said.
For Oliver to get in bed or use the bathroom, his mother had to pick him up and take him, especially when David Bellant is at work.
It is a possibility that as Oliver grows, his body will become stronger and the breaks won’t be as bad. Regardless, the heavier he becomes, the harder he will be to carry.
“In the future, I won’t be able to carry him.”
Looking to the future, Oliver’s family his holding a fundraiser at Old McMicky’s Farm in Odessa on May 27, kicking off Memorial Day weekend. Forty percent of the proceeds will go towards “Oliver’s Project.”
The project will create a master suite for Oliver that is entirely wheelchair accessible. His room will expand well into the backyard, making the room longer so he has room to move around in his chair with his support dog, Ringo. The bathroom will also be wheelchair accessible. The furnishings will be set to 5 feet or under so he can reach everything he needs from his chair.
The fundraiser will give 20 percent of the proceeds back to the farm and then another 40 percent to Oliver’s community, started by Bryan.
The thought of talking about Oliver’s community makes Bryan cry, but she did provide a pamphlet on the organization. She did say, however, that through it was started because of Oliver, it is about much more.
“At the beginning, we had a lot to learn about OI and we looked to several organizations for help,” the pamphlet reads. “We had many small fundraisers to collect donations to attend medical conferences which enabled us to learn as much as possible about his disease.”
In doing this, however, the family realized that though organizations offer grants for entry fees, no one offered to help pay for hotel stays or airfare. There also wasn’t a support system to aid with transportation to and from specialty hospital hospitals in U.S. like the Children’s Hospital in Omaha, Nebraska.
It is Oliver’s Community’s mission to raise funds for travel expenses to specialized clinics and conferences, supplies and tools for treatment and mobility for kids also dealing with OI. Currently, they are raising money to help cover fees for a national conference in Baltimore, Maryland in 2018 and to continue to aid in providing airfare.
Bryan also added that the other goal is to raise awareness. May 6 is international OI Awareness Day, also known as Wishbone Day. The awareness color is yellow.
“I like the Wishbone Day because it’s not about money,” Bryan said. It’s only about raising awareness for the disorder.
For young Oliver, however, it’s the little things that make him happy. Standing up in the pool on Easter Sunday wasn’t just impactful for his parents, but for Oliver as well.
“He wants to be a boy,” David Bellant said. “He wants to do cannon balls.”
He’s an avid Tampa Bay Lightning Hockey and Star Wars fan. He likes video games and loves his dog.
Oliver loves to swim and because of its low resistance nature, it’s not hard on his bones. He can feel like a regular kid.
“He’s a great swimmer,” David Bellant said. “I think he can be a gold medalist.”
His parents try and make his life as normal as possible. They visit places like Disney, Bush Gardens and Mosi, and rotate their adventures so it’s something a little different every time, but still fun.
“It’s not physical for him,” Kelly Bellant said.
As for the event at the farm, David Bellant is hoping to raise $100,000. As for Oliver, he just wants a lightning player to be there.