7-year-old with fatal genetic disorder gets playground of his dreams
Jordan was born with a rare genetic brain disease known as TECPR2. At age 3, they told his parents that Jordan only had a few months to live.
Jordan was born with a rare genetic brain disease known as TECPR2. At age 3, they told his parents that Jordan only had a few months to live.
Jordan was born with a rare genetic brain disease known as TECPR2. At age 3, they told his parents that Jordan only had a few months to live.
Seven-year-old Jordan Ogman plots courses to hunt for treasure from Pirate's Cove at Boca Raton's Patch Reef Park because in his words, "This pirate ship is the best in the town."
The playground right off Yamato Road may have the best vessel for explorer Jordan's voyages, but sister Kira said there are some choppy waters at the playground for her little brother.
"The mulch, he can trip over it and like when he goes to an uneven surface," Kira said.
Jordan was born with a condition so rare it hasn't been named yet. The Ogmans know it as TECPR2. His father David Ogman, described it as "a rare fatal genetic brain disease. At age 3, they told us Jordan only had a few months to live."
Four years passed that deadline. Mom Stacey said, "He's a miracle. We are beating the odds every single day."
But the brave explorer Jordan still needed a ship built for him. That's where Commissioner Steve Engle and the Greater Boca Raton Beach and Park District sailed in with a quote from Eleanor Roosevelt.
"She said I'd rather light a candle than curse the darkness Jordan and his family are — they’re the brightest candles I know," Engle said.
"They are going to redevelop one of the playgrounds to make it accessible for kids with disabilities and it's really going to be tremendous," David Ogman said.
His wife, and Jordan's mom Stacey, says there are several obstacles to Jordan's day of play.
"Some of the stairs on the climbing apparatuses are not inclusive. They have too many openings. Him trying to traverse his way to the splash pad in the back is too difficult," Stacey said.
Those parts of the playground will be fixed along with the divots in the turf after a unanimous vote by the beach and parks district to commission a state-of-the-art fully retrofitted playground for all abilities.
"For kids with disabilities, it's a very lonely world. You end up staying in your house because there's no safe place to go, and now all these kids are going to have a place that they know is accessible," David said.
When Jordan himself was asked about changing his favorite playground, he looked around, paused, and said, "I have an idea."
Jordan has lots of ideas about his favorite playground he’s shared with the commission, which is currently working with contractors to create a safe space for kids of every ability and age.
The Ogmans are hoping Jordan continues to beat the odds, but that will take pricey gene therapy. If you want to contribute to the Saving Jordan organization, click here.