Florida Family's Heartbreak Sparks AI That Diagnoses in Seconds

When Jordan Avi Ogman finally got diagnosed with TECPR2, a fatal genetic brain disease, he was already four years behind on potential treatment.

His father David spent those years driving to every doctor in South Florida, hearing the same frustrating response: "Everything's fine. Every kid develops at their own pace." But everything wasn't fine, and precious time was slipping away for a child with a treatable rare disease.

The Ogman family's struggle reflects a heartbreaking pattern across America. Families with rare diseases wait an average of five to seven years for an accurate diagnosis, watching costs pile up and conditions worsen while doctors flip through reference books searching for answers.

"The worst thing was four years of not knowing," David said. "Unfortunately, we're four years behind in developing the gene therapy. By the time it's developed, Jordan might not be with us because we lost those four years."

But their painful journey inspired something remarkable.

Sivotec, a Boca Raton company, developed GENA, an artificial intelligence platform that compresses years of genetic diagnosis confusion into 10 seconds of clarity. CEO Pete Martinez and his team essentially captured the mind of a geneticist and transformed it into lightning-fast algorithms.

"We actually took the mind of a geneticist and put it into algorithms, and then accelerated the three to four days that it would take to diagnose one case, and we got it down to 10 seconds," Martinez explained.

The numbers tell an incredible story. GENA has already helped diagnose 160,000 cases involving rare diseases. The company plans to expand beyond geneticists to pediatricians and primary care doctors, the frontline physicians who first see worried parents like the Ogmans.

The Ripple Effect

Every family that gets an instant diagnosis instead of waiting years gains something priceless: time. Time to start treatment while it can still help. Time to develop gene therapies before it's too late. Time to stop the emotional drain of endless doctor visits with no answers.

For conditions like Jordan's TECPR2, where children pass away from central sleep apnea caused by brain degeneration, those years matter desperately. Early diagnosis could mean the difference between developing a cure in time and losing a child to the unknown.

The technology represents a fundamental shift in how medicine approaches rare diseases. Instead of rare disease patients finding expert doctors, expert knowledge now finds them instantly, no matter which hospital they visit.

"If we had AI at our fingertips at any of these hospitals, Jordan would have been diagnosed immediately, and his cure would have already been developed," David said.

The Ogman family continues hoping for a miracle for Jordan while working to ensure other families don't face the same agonizing wait. Their story shows how one family's darkest struggle can light the way for thousands of others still searching for answers.