The Clinical Trial That Opened His World

For most of his life, Manny Fernandez kept moving forward without dwelling on what might lie ahead. He built a life in Miami with his wife, Grisel, raised two children, worked nearly four decades at the post office, and filled his home with projects that kept his hands busy—woodworking, home renovations, even building a pergola for the hundreds of orchids he and his wife loved to grow.

However, everyday routines became more frustrating. Manny first noticed major changes in his night vision, and driving became stressful. As his vision narrowed, the impact became harder to ignore. Manny was in his 40s when he learned the reason night driving had become so difficult. He was diagnosed with retinitis pigmentosa (RP), and while the news was difficult, it wasn’t entirely unexpected. By then, Manny had already begun piecing together a family history that no one had openly discussed. His younger brother Miguel had experienced similar symptoms years earlier. Manny remembered his father struggling with vision loss later in life, along with stories of other relatives who may have also lived with the disease. As he connected the dots, he realized RP wasn't just part of his own story, it had quietly shaped his family's story for generations.

“There was never talk about a cure,” says Manny. “Back then, nobody talked about it. It was just something you learned to live with.”

At work, he once walked directly into a support column inside the empty post office because it was hidden in a blind spot caused by his vision loss.

“That’s when it really hits you,” recalls Manny. “You start thinking, ‘My life is closing in.’”

Still, Manny refused to stop living independently, and he adapted however he could. His wife became his steady guide, gently squeezing his hand to warn him about steps or curbs when they walked together, while friends stepped in to help whenever needed. Manny also learned to navigate with a white cane and a powerful flashlight, especially while traveling.

“You don’t realize how important vision is until you start losing it,” says Manny. “When you don’t have vision, you depend on other people.”

Even while adjusting to life with RP, Manny never lost interest in research. For years, he volunteered for studies, believing participation was one way he could help future generations, including his children and grandchildren.

Then one phone call changed everything. A clinical trial coordinator from a local hospital called looking for Manny’s brother, Miguel, about a new clinical trial. Manny immediately told her he had the same disease.

“When she said ‘study,’ the alarm went off,” recalls Manny. “I said, ‘I need it. Put me in.’”

The clinical trial, sponsored by Ocugen, involved an experimental gene therapy procedure for RP. Manny underwent extensive testing to qualify, including bloodwork, obstacle-course evaluations in dark environments, and detailed imaging designed to map exactly how much vision remained. Eventually, he was accepted into the trial.

The stakes were high, and Manny would become the third person ever to receive the treatment.

“Of course you get nervous,” says Manny. “They’re getting into your eye. And this was the first time this treatment was being done in a human.” Hope proved stronger than fear.

“If you don’t take risks, you don’t gain anything,” says Manny. “If my decision can help even one person, that would be worth it.”

At first, Manny didn’t notice any changes after surgery. Friends and family constantly asked whether his vision had improved, but progress was gradual. Then, one afternoon while coming home from the office, something happened that stopped him in his tracks.

The sun was shining on the left side of his face when he suddenly noticed movement in an area he normally couldn’t see.

“I thought it was a bird,” recalls Manny. “Then I realized it was a car.”

For the first time in years, Manny experienced something he never thought possible again, he could detect movement in part of his peripheral vision, and the emotion overwhelmed him.

“I slowed down because I couldn’t believe it,” says Manny. “People don’t realize how important that is for someone like me. Opening up even a little more of that window of vision means the world to me. I cannot put words to it.”

Today, Manny says the procedure gave him more than improved vision. It gave him renewed hope.

“This opened my world,” says Manny. “It gave me another perspective on life.”

He remains deeply grateful to the researchers, clinicians, and organizations advancing treatments for blinding diseases. He recognizes the Foundation Fighting Blindness with helping connect patients to information, research, and a strong community at a time when patients and families often feel isolated and alone. He is thankful for companies like Ocugen for pursuing treatments that provide hope.

“The Foundation Fighting Blindness is important for people like me,” says Manny. “If it wasn’t for the Foundation, I wouldn’t know about many of these things.”

Manny now shares his experience openly with others considering clinical trials. He’s even spoken with another man who was hesitant about the trial. After hearing Manny’s story, he ultimately decided to participate in the study himself.

Later, he called Manny in tears to thank him.

“We both cried,” says Manny. “He told me thank you for making him believe.”

Now in his 70s, Manny continues looking ahead. He hopes to eventually receive treatment in his other eye and remains optimistic about what the future may hold, not only for himself, but for generations to come.

“For families hearing this diagnosis today, they don’t have to be afraid anymore,” says Manny. “There’s hope now. There are researchers, companies, organizations, and people working every day to help us.”

And for Manny, that hope has already changed his life.

“I’ve been able to see again,” says Manny. “Even a little bit. And that means everything.”

 

This Beacon Story is sponsored by Ocugen.