Jordan Ogman, 7, charges toward his parents, sister, grandmother and cousin, picks up a pile of mulch and tosses it into the air like confetti at a birthday party. He holds the very same mulch that threatens to harm him; the very same mulch his family petitions to eradicate.
Every parent watches out for bruises and scraped knees induced by playground escapades. For Jordan, those dangers are much higher.
He was born with a fatal genetic condition called TECPR2, after the affected gene, which limits his cognitive and physical development, such as walking and speech.
Along with fighting for a cure, Jordan’s parents, David and Stacey Ogman, also are fighting for a more inclusive playground.
After David Ogman went before the Greater Boca Raton Beach and Park District in January, the commission unanimously voted to redesign Pirates Cove Playground in Patch Reef Park, at 2000 Yamato Road, into a more accessible space for all.
TECPR2 is so rare that it does not yet have an official name, and Jordan was not diagnosed until he was 4 years old, despite dealing with developmental complications since birth, when he was in and out of the neonatal intensive care unit. His parents took him to a string of doctors, but none had the right answer.
Jordan was not correctly diagnosed until his parents took him to the University of Miami for whole exome sequencing, his family said. This is a method of detecting changes in genetic disorders that may be causing diseases.
At that time, only a handful of cases had been identified across the world in other children, his dad said. Researchers do not believe any have lived past their first decade of life.
“Children with rare genetic diseases that cause respiratory dysregulation are at particularly high mortality risk due to development of respiratory failure,” researchers wrote in 2020 journal article about TECPR2 mutation.
Advances in whole exome sequencing have revealed more cases across the world in the past few years, but only a few dozen still exist.
David and Stacey Ogman were told that one day, their son just wouldn’t wake up. That is because a symptom of the disease is central sleep apnea, so the children with TECPR2 primarily die in their sleep.
Jordan uses a nasal cannula when he sleeps, which helps him breathe.
“We live in anticipatory grief,” his mom said.
Stacey and David Ogman refuse to hide any information from Jordan’s older sister, 10-year-old Kira Ogman.
“She treats him just like I think any big sister would treat a little brother,” Stacey Ogman said. “When he was first diagnosed, she said to me, ‘Mommy, we just need to cure the dying part.’”
But what’s so inaccessible about Pirates Cove Playground? The rather standard playground is complete with a slide, swings, a splash pad and even a faux alligator.
One big problem is the mulch, Jordan’s family said. He has what is called a balance deficit, so he is much more likely to trip and fall.
He and others would be safer on a surface like a rubber pad, no matter their age or ability. Children who use wheelchairs or walkers would also benefit from this type of surface.
Another problem is the height of components like slides, stairs and swings, which pose a danger. Once, Jordan missed a step, hit a steel pole and split open part of his head and eye, which required eight stitches, his dad said.
“A kid like Jordan can’t jump up onto a swing at a typical kid’s level,” David Ogman.
The redesign may also include a fence because kids with special needs have a tendency to run off even more so than kids without special needs because of what is called elopement, or the desire to abandon a protected atmosphere, such as a home or school, without telling anyone.
Jordan is no exception. At times, he seems almost overwhelmed by the choice of either roaming the playground or running back to his family and strangers alike and conversing with them and grabbing their hands. He successfully pulls off both.
The fence would heighten the safety of the park, adding an extra layer of protection.
Specific redesign plans have yet to be released, but David Ogman said he’s working with Greater Boca Raton Beach and Parks district commissioner Steven Engel and an architect to craft a plan that considers not only Jordan but other people with physical and cognitive limitations.
“The main goal is to truly have it inclusive for all kids, for neurotypical and able-bodied children, and for kids like Jordan who have a neurological condition, to kids who have to walk with walkers or canes or wheelchairs,” Stacey Ogman said. “Everybody.”
Abbas Zackria, the principal architect for the project, said the design should be coming together in the next couple of weeks before it will then be presented to the beach and parks commission for approval.
Zackria, who works with Walters Zackria Associates, said practically the entire playground will be redesigned, including an addition of more ADA parking spots.
Walters Zackria Associates’ specialty is parks, Zackria said, but this project is unique because it revolves around 100% accessibility.
Usually, at least some park features have to be considered accessible, but not all, Zackria said, which is what will make this Boca Raton park different.
This will not be the first universally accessible park in South Florida, though.
In Boynton Beach, nearly 40 acres are dedicated to Barrier Free Park, a park designed to equally accommodate people of all ages and abilities.
In Wellington, Scott’s Place Barrier-Free Playground is another example of a universally accessible park.
The Ogman family frequents both, David Ogman told commissioners during the January meeting. But they require a 30- to 45-minute drive, and for the Boca Raton residents, having Pirates Cove become an accessible playground would mean having one within a five-minute drive of the Ogmans’ home.
But their hope is that people from all over Boca Raton can enjoy and use the park, too.
Currently, Jordan Ogman’s grandmother, Lisa Green, often takes him to Pirates Cove Playground after picking him up from a daily applied behavior analysis center, My Favorite Therapist, in Deerfield Beach.
Jordan Ogman is quick to eagerly scamper off to a portion of the playground that might not be the safest for him to traverse, so Green follows him as closely as she can.
Greater Boca Raton Beach and Park district commissioner Steven Engel said the commission intended to redesign Pirates Cove Playground before David Ogman stepped forward, but the goal became more tailored to the Ogman family’s pleas.
“We gave it a higher priority. It was something that we knew we needed to do,” Engel said. “It wasn’t originally something that was on the front burner. We had other projects. This has been moved to the front burner.”
The decision progressed without much deliberation, Engel said.
“He (Jordan) wants to be like any other 7-year-old. And here he is, his parents were told, ‘Well, start making funeral arrangements,’” he said. “They are fantastic, fantastic people, and he’s a fantastic child. … This is a no brainer for us.”
While Engel said he would prefer for the project to be completed as soon as possible, he is uncertain of how long the redesign could take given that the commission still has to endure a permitting process with the city. Construction would follow after that.
David Ogman hopes the new park can be unveiled by the end of the year.
For now, when Stacy and David are not working as full time as a state attorney and a wealth adviser, respectively, they are building the Jordan Avi Ogman Foundation, which they created in December of 2019.
On Saturday evening, they held their first in-person fundraising event since the onset of the COVID-19 pandemic, at the Keshet Gallery in Boca Raton.
David Ogman said nearly 100 people dropped into the gallery to check out and buy some of the pieces. 20% of the art sale proceeds went to the foundation, which funds increased research efforts for a cure.
“They said take him home and love him, there’s no treatment, there’s no cure and there’s really no hope,” Stacey Ogman said. “We said, ‘We will take them home, we will love him, and we will fight for a cure and that’s what we’re dedicated to doing.’”
