Hometown: Bayamon, Puerto Rico
Involvement with HFGF: 12 Years
Twenty-three-year-old Jonathan Lebron thanks his parents for his optimistic outlook on life, regardless of being diagnosed with Severe Hemophilia A when he was less than a year old.
“I have always felt good,” he says. “I had no real issues growing up. It helped that I was raised in a very positive environment.”
His parents not only instilled that positivity at home, but reached out to others in the bleeding disorders community. That led his mother, Yolanda, to serve as president of the Puerto Rico Hemophilia Association before moving to the United States.
The family, which includes an older sister, left the U.S. territory 12 years ago and settled in the Orlando area. Jonathan attended Avalon Middle School prior to graduating from Timber Creek High School.
Jonathan, who began self-infusing when he was 11, says he is fortunate that life with Hemophilia has been pretty much uneventful, from his early childhood in Puerto Rico to his formative years in Orlando.
After high school, Jonathon decided to enroll at the University of South Florida to study music and education. Although a regular at the USF Hemophilia Treatment Center (HTC), he did not attend USF for that reason. But it didn’t hurt considering the HTC is located on campus.
And it was there that his HTC hematologist put Jonathan on a new journey, the ultimate voyage of freeing himself from infusing factor twice a week.
“My hematologist recommended me as a good candidate for gene therapy,” he says. “I was one of the last patients in the trial in Miami.”
After a battery of tests, Jonathan spent two days in August at the HTC at the University of Miami where he underwent the procedure and was monitored for any possible side effects. So far so good. For the next year or so, Jonathan will need to adhere to regular blood work and pay regular visits to his hematologist to make sure all is well.
Now, armed with a new lease on life and a master’s degree from USF, Jonathan is currently searching for a job to launch his career.
“I want to be a music teacher,” he says, noting that Hemophilia has never stood in his way. “It’s just a part of me. It doesn’t really define me.”
Johnathan also wants to become more involved with the Foundation as an advocate, especially on visits to Tallahassee serving as a voice for the cause.
The Foundation looks forward to his participation and will continue to follow his prognosis.
What an incredible story! Jonathan is active in the Florida bleeding disorders community. Dollars raised at events like the Orlando Creepy Crawl and Vampire Mile have helped Jonathan attend Camp Spirit (where he’s made lifelong friends) and receive HFGF scholarships. Would you like to help patients like Jonathan? Register now for the Orlando Creepy Crawl!