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OLATHE, KS (KCTV) -
Three years ago Faces of Kansas City introduced people to a local man who was in a desperate race against time. But a recent medical breakthrough is giving him renewed hope.
Jeff Benelli is fighting to keep from going blind. It's a fight he might lose, but that isn't stopping his battle.
Three years ago the Olathe man was training daily and running marathons all while raising money to find a cure for the rare disease that's slowly stealing his vision.
"My eyesight is deteriorating. I'm not going to have eyesight at all in the next four or five years so that's the time clock I'm working with," he said.
Benelli raised more than $150,000 to find a cure for Choroideremia, the disease that's left the family man and father of two nearly blind.
"When I go to my kids' basketball games, I don't see a whole upper body, If I look at a number I can only see the number, I don't see his arms or legs or head. My eyesight has dropped off quite a bit," he said.
Last month, Benelli was thrilled with the results from a clinical trial in Oxford, England. In the trial, which was featured on the CBS Evening News, Jonathan Wyatt and five others with Choroideremia were treated with gene therapy and the results were eye-opening.
"When I got home I looked at Diana's mobile phone and said, I can see the digits," Wyatt said.
Benelli takes pride in the results because the money he raised locally helped to make the trials in Oxford possible.
"A chunk of that money came from this area, so things are happening nationally and Kansas City is playing a role in this monumental national outcome and KC should be proud," he said.
Benelli's eyesight has deteriorated to the point that running is no longer safe. That's why every chance he gets, he's at his computer reading the latest research concerning Choroideremia.
"There is a treatment that is sitting in Oxford that, if we can roll that out to the public, people do not have to go blind and I think that is an incredible story," he said.
Right now, Benelli is in Philadelphia where he's learning about plans to hold the same kind of clinical study in the U.S. that was so successful in England with the Oxford trials. He is hoping he might be eligible to take part in the clinical trial to at least stop his vision loss.
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