BOCA RATON, Fla. — For most parents, a medical diagnosis can take minutes. But for one Florida family, it took years.

In 2019, Jordan Avi Ogman was diagnosed with TECPR2, a fatal neurodegenerative genetic disease. His family says it took nearly four years to get that answer.

“The worst thing was four years of not knowing,” said his father, David Ogman. “And us going to every doctor in South Florida trying to figure this out. They look at Jordan. They thumb through the physician’s desk reference. They say everything’s fine. Take him home. Every kid develops at their own pace.”

Like many families dealing with rare diseases, they faced a long and difficult path to a diagnosis.

“They all pass away inner sleep from central sleep apnea. It’s a genetic brain disease, but it affects the entire central nervous system.” Ogman said.

The case highlights a broader issue in health care: parents often wait years for answers, losing valuable time as costs and emotional strain grow.

“Unfortunately, we’re 4 years behind in developing the gene therapy. I think by the time the gene therapy is developed, you know, Jordan might not be with us because we lost those 4 years,” Ogman said.

Now, a Boca Raton company says it may have a solution.

The story is also about a local innovation -- GENA, an artificial intelligence platform based in Boca Raton that aims to reduce genetic diagnosis timelines from years to seconds.

“We actually took the mind of a geneticist and put it into algorithms, and then accelerated the 3 to 4 days that it would take to diagnose one case, and we got it down to 10 seconds,” said Pete Martinez, CEO of Sivotec.

The company says it has already helped diagnose 160,000 cases involving rare diseases and hopes to expand its use beyond geneticists to pediatricians and primary care doctors.

On average, patients wait five to seven years for an accurate diagnosis. During that time, diseases can progress, and some of them are treatable.

As for Jordan, his family is praying for a miracle. They also hope their story brings awareness so others don’t have to face the unknown.

“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,” Ogman said.

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