Beacon Stories

Nov 15, 2021

Livie’s “New Eyes”

At the age of five, Livie was diagnosed with LCA but her doctor immediately told her parents that clinical trials were underway and that Livie could soon be eligible for treatment. Not long after, they got a phone call from Spark Therapeutics and Livie received LUXTURNA®. Now eight, Livie’s confidence is at an all-time high with her “new eyes.”

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Livie and her mom Jeannine

Livie and her mom Jeannine by a Foundation Fighting Blindness table at an event.

Olivia, known as Livie, her sister Avery, and her parents, Darren and Jeannine Klinefelter, live in Boulder, Colorado.

From the time she was an infant, it was clear that something was wrong with Livie’s vision. Wearing glasses helped, but Darren and Jeannine knew something still wasn’t quite right, and they continued to search for answers. In the meantime, Livie’s parents never treated her any different than her sister.

“We would tell her you need to rise up to meet the challenges life throws at you,” Darren recalls. “You got dealt a curveball, and you don’t see as well as the rest of the people, so you need to step up and do a better job by making adjustments. And she understood that.”

Livie at the Scramble for Sight event with co-chair Scott Burt both giving thumbs up.

Finally, at the age of five, thanks to a recommendation from the Foundation Fighting Blindness, Livie was connected to Dr. Marc Mathias at the Children’s Hospital Colorado, who ensured Livie was genetically tested. Livie’s results confirmed that she had Leber congenital amaurosis (LCA) with mutations in the RPE65 gene. Although Darren and Jeannine were distressed by the news of their daughter having a degenerative eye disease, Dr. Mathias explained that clinical trials were underway, and Livie soon could be eligible for treatment.

Not long after, when Livie and her family were on vacation staying in a castle in Germany, Livie knelt down on a medieval prayer kneeler and said, “Dear Jesus, please let there be something when I get older to let me see again.”

8-year-old Livie outside

Livie now, 8 years old, outside hiking.

The very next morning, they got a call from Spark Therapeutics that Livie was now eligible for treatment using the new FDA-approved gene therapy LUXTURNA®. Two weeks later, Livie and her family flew to Los Angeles, and within a few months, Livie underwent surgery and received treatment on her left eye. The next day, when the doctors removed the patch over her eye, Livie looked at her dad and said, “You have blue eyes, Daddy!” Just a week later, Livie had the treatment on her right eye.

Since receiving the treatment on both eyes and returning home in late 2018, Livie is flourishing more than ever, and the change has been astonishing for her family.

“When we ride bikes, Livie now leads the way. And she even plays goalie for her soccer team,” says Darren. “One of my favorite stories, though, comes from her teacher, who asked Livie if she could see the equations on the chalkboard at the front of the classroom and responded, ‘Of course I can see them, I have new eyes.’”

Now eight years old, Livie’s vision continues to improve. Livie is more active than ever – now learning to ski, continuing to take karate classes, play soccer, and more – and her confidence is at an all-time high.

“Livie used to sit in the front row and use an iPad a few inches from her face to see in class,” says Darren. “But now she sits with the other kids, and it’s just changed everything. Her teachers always say she’s fiercely confident.”