Aug 21, 2023

Life as a Teen with Retinitis Pigmentosa

Beacon Stories

At a mere 15 years old, Ava Ruggiero’s world shifted when she received a diagnosis of retinitis pigmentosa. As Ava continues to find balance as a student and athlete, she discusses the challenges of navigating her diagnosis alongside her parents, Joseph and Stephanie.

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By Simone Robinson

Ava posing in front of her home

Ava Ruggiero, a 16-year-old native of Philadelphia, faced life-changing news when she was diagnosed with a retinal disease last year, becoming the first in her family to have the condition. Ava shares her journey with her parents, Joseph and Stephanie, and two younger siblings, Stella and Joseph, who all have served as a key support system for the teen. Ava also shines on the field as a dedicated high school athlete, showcasing her passion and eight-year commitment to field hockey.

Last May, during a routine family eye checkup attended by Ava and her siblings, the doctor noticed something unusual in her images. She was later referred to a specialist at the University of Pennsylvania (UPenn), which led to a formal diagnosis of retinitis pigmentosa (RP).

“Ava had some symptoms as long as we can remember, but we had no clue it was anything,” says Joseph. “We always joked that Ava was clumsy because she was always tripping on things or running into something. But little did we know there was a reason for it.”

Following her diagnosis, the family of five encountered challenges in coming to terms with her newly identified condition, grappling with the uncertainty of her future.

“One of the hardest things I ever heard in my life was when we were in her appointment as she was being diagnosed, and she asked me, ‘Am I going to go blind?’” says Joseph. “The first month was tough for all of us. There were a lot of tears. We were worried about how she would respond to it and what it would mean for her life.”

Ava with her family

In the face of the diagnosis, Ava's follow-up appointments have consistently delivered positive news. Her vision has remained steady, and she continues to live her teenage life without many limitations.

“When I found out, I was upset and sad. I felt it would ruin my goals because I thought I would go blind really fast,” Ava says. “But I realized it doesn’t affect me that much, and it won’t stop me from accomplishing my goals.”

Ava is on track to start her junior year of high school, where she will continue to play field hockey.

“One of the hardest things for Ava was playing field hockey. It was recommended that she wear glasses with amber lenses, and she was self-conscious about that,” Stephanie says. “The coaches last year had Ava explain it to the team, and I think that really helped boost her confidence as far as not feeling discouraged to play alongside her teammates. They have all been very supportive of her.”

Ava and her family have found support not only within their own circle and her team but also through organizations such as the Foundation Fighting Blindness and various social media communities.            

Ava posing with her field hockey teammates

“You’re going to have some ups and downs but connecting with other people is important,” Joseph says. “We joined the Foundation, and we are grateful for being a part of that,” Stephanie adds. “We also let Ava join Facebook to be a part of the retinitis pigmentosa group and other communities, so that she can meet other kids her age and get involved.”

Since discovering the Foundation during Ava’s initial appointment at UPenn, the family has participated in local events such as the Philly Tough Mudder and became the top fundraising team at the Philadelphia VisionWalk.

“Now that RP has become a part of our world, our family wants to do what we can to help Ava and others in any way we can,” says Stephanie.

“This experience has brought our family closer together, and I’m happy to have people here to support me and donate to this cause,” Ava adds.

Looking ahead, Ava plans to pursue a college education in psychology and create a positive impact by helping others.