Jackson’s New Discoveries After LUXTURNA

The first time Jackson Kennedy saw ice cubes floating in a glass, it stopped him in his tracks. So did watching traffic through a hotel window and noticing the way his dad's mouth moved as he chewed a sandwich.

For most people, they're moments that pass by unnoticed. For Jackson, they were moments he'd waited his whole life to experience.

Born with Leber congenital amaurosis (LCA) caused by mutations in the RPE65 gene, Jackson's family knew something wasn't quite right from an early age. But getting to that answer wasn't easy.

As a toddler, doctors initially questioned whether autism might explain why he wasn't making eye contact, but his parents had a gut feeling that wasn’t it. But it wasn't until years later that another eye specialist recommended genetic testing. His parents hoped it would provide clarity, but they were told it was too expensive and unnecessary at his young age.

Jackson's vision continued to deteriorate significantly. He navigated with a white cane, read and wrote in Braille, and often walked into walls because he simply couldn't see them. Wrestling, a sport he fell in love with at just five years old, was one of the few activities he could participate in with confidence.

Years later, as LUXTURNA^®—the first FDA-approved gene therapy for an inherited retinal disease—moved closer to becoming available, Jackson underwent genetic testing to better understand the cause of his LCA. The results confirmed that his LCA was caused by mutations in the RPE65 gene, making him eligible for a treatment that had once seemed impossible.

Soon after, just weeks after turning 9 years old, Jackson underwent two surgeries, one on each eye.

"We were definitely nervous," recalls his mom, Mary Ann. "We thought, 'What if this isn't the right choice?'"

Jackson felt the same. "I was nervous and excited," he says. "But I remember wondering, 'What if it doesn't work?'"

After the first surgery, it took about a week for the temporary air bubble placed in his eye to disappear. Then the changes began.

"I walked outside, and it was so bright," says Jackson. "It was weird at first because I'd never experienced that."

Little by little, his world became clearer. He vividly remembers seeing ice cubes for the first time. And a few months later, while staying in a hotel overlooking downtown Philadelphia, he didn’t want to look away from the window. For hours, he watched cars drive through intersections and traffic lights change below—details he had never been able to make out before.

"We couldn't pull him away from the window," recalls his dad, Dirk. "He just sat there all night watching the traffic."

One afternoon at home, another unforgettable moment unfolded around the kitchen table.

"I could tell Jackson was staring at me," Dirk remembers. "I asked him what was wrong, and he said, 'What are you doing with your mouth?' I told him I was chewing my sandwich."

Jackson paused before asking a question his dad will never forget. "'That's what chewing looks like?'" as he laughed hysterically at this newly discovered action. 

Not long after, Jackson even climbed behind the wheel of a go-kart for the first time, a milestone that would have seemed unimaginable before his treatment.

The changes in his life reached far beyond these firsts. Jackson transitioned from reading Braille to using large print books, and school became easier with the help of accessible technology. Today, he excels academically as an honor roll student, but his parents say what impresses them most isn't his grades, it's the determination he's shown every step of the way.

In the past year, Jackson and his parents have started touring colleges together. Jackson's top choice right now is Monmouth University, where he's hoping to study communications with a minor in political science, and to keep wrestling.

Wrestling remains the place where he has always felt most like himself. Because of his low vision, competition rules require him to stay in physical contact with his opponent at all times; if contact breaks, the match resets. It's a rule built-in for safety, and one Jackson has built his whole style around, relying on touch and feel rather than sight to compete.

“I've gotten so used to it,” says Jackson. “I can do it with my eyes closed at this point.”

Although Jackson is humble about wrestling, his parents know just how much effort it's taken for him.

“He's had to work harder than other kids his whole life to make up for what he couldn't see the coaches demonstrating,” says Mary Ann. “I don't even know if he's realized how much harder he's had to work for that.”

At tournaments, competitors frequently ask why he wrestles differently, and some assume he has an advantage.

"I think people sometimes underestimate what I can do," says Jackson. "They'll ask if I need help, and I'm like, 'We're in a bright gym—I think I can find the locker room.'"

Although Jackson is excelling in so many ways, he still has low vision, meaning he can't legally drive, and leans on friends and family for rides when he needs them. An adjustment he's made peace with, the same way he's made peace with asking for help.

"If you need help, ask for it," says Jackson. "Don't think people are going to judge you. It'll be fine."

Looking back, his parents admit they never imagined a treatment like LUXTURNA would become reality during Jackson's childhood.

“You always stay hopeful, but when we got the call that it was approved for what Jackson has, it was surreal,” says Dirk. “I couldn't believe we were actually driving to the hospital for something we never thought would happen. We are forever grateful for what the Foundation has done for our family, and then seeing what it's done for other families is truly amazing.”

Jackson has lived a life full of adapting, learning, and embracing every new opportunity that comes his way. And today, Jackson isn't focused on those first discoveries anymore. He's focused on what's next—and thanks to the progress that changed his life, that’s exactly where his journey is headed.