DEERFIELD BEACH, Fla. (CBS12) — The heart-tugging story of a 4-year-old Boca Raton boy battling a rare genetic disease and his parents’ desperate efforts to fund research to save the child’s life has now captured the attention of a local Congressman.
Jordan Ogman’s daily therapy session Tuesday at My Favorite Therapist in Deerfield Beach drew the watchful eye of Congressman Ted Deutch.
The lawmaker timed his visit with Jordan to coincide with Rare Disease Week.
“That adorable boy that we just spent time with — I mean, that’s the face of why this is so important,” Deutch said.
Jordan has a rare, genetic brain disease called TEC-PR2. It’s degenerative and ultimately fatal.
The disease was only identified in recent years.
Jordan’s parents are trying to raise $2.5 million to pay for experimental research at the University of Florida’s Gene Therapy Center.
The family has a fundraising website, and last week, a large event in Boynton Beach put the Ogman’s effort well over $200,000. The money is already being used in Gainesville.
“The next step is stem cells, and they are under the microscope, they are researching,” said Stacey Ogman, Jordan’s mother.
But the Ogmans still need to raise $2 million more and Jordan’s disease is at a critical stage.
“It’s expensive research, but what price do you put on saving a life?” And in this case, it’s an investment that will save other lives too,” Deutch said.
Finding a gene therapy for Jordan should help research into other diseases as well.
“We’re talking about money versus lives,” Deutch said. “We have to come up with the ways to find the money. We’re at this incredible moment where the science can do so much to help people with these rare diseases. We just need to make sure the science can get done and the resources are there to do it.”
In Washington, Deutch has co-sponsored the Rare Act, which would provide more federal funding of research into rare diseases.
But Deutch said he believes more can also be done at the state and university levels.
Deutch said he plans to mention Jordan and show his picture in a speech on the House floor later this week. Deutch said Jordan gives a face to the need to increase funding for life-saving research.
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