Boca Raton’s Ogman Family Fights To Save Son From Rare Jewish Disease
When a crisis strikes, everyone reacts differently. Some give up or become paralyzed.
Others – like David and Stacey Ogman – jump into action. A year ago, their 4-year-old son, Jordan, was diagnosed with a mutation of the TECPR2 gene, a neurodegenerative genetic disease that can be both debilitating and fatal.
“After he was a year old, everything slowed down,” explains Stacey, 38. “He was missing certain milestones. That’s when we decided we should consult professionals.”
It took three years of tests for the Boca Raton family to discover that Jordan, now 5, had a disease so rare that science hasn’t even attempted a cure. The mutation was originally found in a small number of Jewish patients from Uzbekistan but has subsequently spread. However, because of its rarity, TECPR2 isn’t included in the genetic testing panel that many Jewish couples, such as the Ogmans, take before starting a family.
They were shocked and dismayed by the news, but they responded decisively.
“We hit the ground running,” says David, 44. “We had to find out how to save Jordan’s life.”
David, a wealth advisor at Merrill Lynch, and Stacey, a lawyer who works in foster care, had the savvy and drive to find a solution.
“We knew we were in a race with the clock, since this disease is a killer,” Stacey says.
After extensive research, they realized that gene therapy offered the best hope. If a healthy version of the gene could be delivered in time, there might be a chance for Jordan.
Then they struck gold. At the urging of Jordan’s physician, the University of Florida, the couple’s alma mater, agreed to research the disease – if the Ogmans could raise $250,000.
So they established the Jordan Avi Ogman Foundation, which can be accessed on GoFundMe. Within months, they surpassed their goal, and research has begun.
However, another obstacle recently appeared: the pandemic. Suddenly, David and Stacey had to take on most of Jordan’s therapy regimen themselves with the help of online coaching.
But no one complained – not even Jordan’s loving 7-year-old sister, Kira.
“We love Jordan as he is,” Stacey says, “but we need to find a cure.”