Taking the Stage for Stargardt

As Miss Northern Lights Teen 2026, Havah Fleisner is no stranger to the spotlight. But long before she ever stepped onto a stage, she was navigating something far more uncertain—losing her vision.

At eight years old, small, confusing moments began to add up. She couldn’t see the board at school, and reading became harder, but glasses didn’t help. What started as a routine eye exam soon turned into something far more complex.

“It was by total fluke that we even went in,” her mom, Tracy, recalls. “But she could only see the big ‘E.’ That was it.”

As appointments continued, answers remained elusive. Doctors adjusted prescriptions and searched for explanations, but subtle signs kept surfacing—holding papers inches from her face, missing a basketball pass, and falling behind in reading.

“The school even thought she might have a learning disability,” says Tracy. “That’s when I knew something wasn’t right.”

The turning point came when imaging of Havah’s retina revealed something deeper, leading to a specialist and, at just nine years old, a diagnosis of Stargardt disease.

“All I remember the doctor saying is, ‘You’ll never be able to drive,’” says Havah. “And that I was legally blind. I didn’t even know what that meant.”

For Tracy, the moment was equally overwhelming.

“I had no idea what Stargardt disease even was, so I started Googling it in the exam room,” says Tracy. “And I saw ‘leading to blindness,’ and my stomach just dropped.”

But Havah’s diagnosis wasn’t hers alone. Because Stargardt disease is inherited, her siblings soon began their own diagnostic journeys. Not long after, her brother Cruz, now 16, and her younger sister Clara, 14, were diagnosed as well.

For siblings Havah, 17, Cruz, and Clara, it became something they would navigate not alone, but together. Over time, what began as uncertainty evolved into a bond that few others can fully understand.

“We can joke about it,” says Havah. “Things other people don’t get, we all do. I would say we’re very, very close compared to other families, and that’s something I’m really grateful for.”

Yet amid uncertainty, something else took root within their family: resilience. “We’re a family that doesn’t accept ‘no,’” says Tracy. “We fight. We figure it out.”

Still, acceptance didn’t happen overnight, especially for Havah. For years, she pushed her diagnosis aside, not fully understanding how it would shape her future. It wasn’t until she was 15, sitting at lunch while friends talked about getting their driver’s permits, that reality hit.

“That was the moment,” says Havah. “I realized my life was going to look different.”

What followed was a difficult period marked by isolation and frustration.

“I shut down,” recalls Havah. “I was ashamed. I didn’t want to talk about my vision loss. I’d rather fail a class than ask for help.”

Watching her children all struggle with their Stargardt disease was incredibly hard for Tracy.

“They would come home in tears,” says Tracy. “It was overwhelming for all of us, but we don’t quit, and I had to do something.”

Determined to help Havah reconnect with herself, Tracy encouraged her to try something new, even if it meant stepping far outside her comfort zone. They started with her school’s Pom Team, but it wasn’t the right fit.

“I hated every second of it,” Havah admits. “I couldn’t keep up, and I just felt more defeated.”

So when she wanted to quit, Tracy offered another option: pageants. And at first, Havah resisted.

“I remember thinking, I’ll talk about anything except my eyes,” says Havah.

But pageantry introduced her to something unexpected—a platform. In each competition, contestants choose a cause or story to advocate for over the course of the year. With her coach's encouragement, Havah began to reconsider her own.

Instead of avoiding her vision loss, she started to see it as something she could speak about, and something that might help others feel less alone.

That shift led to the creation of her platform: Through Her Eyes, Living Life Legally Blind.

When Havah stepped onto the stage for the first time, something changed.

“I felt loved. I didn’t feel embarrassed,” she says.

She went on to win her first pageant, USOA Teen Wisconsin, and soon after, on her 16th birthday weekend, she captured a national title. In a moment that could have been defined by what she was missing—a driver’s license—Havah found something far more meaningful.

“I came home with a crown and a sash,” says Havah. “And confidence.”

Pageantry became more than a competition—it became a community and a turning point. For the first time, Havah found a space where she felt fully seen and supported.

“I’ve never really had a group of girlfriends,” shares Havah. “But through pageants, I found that.”

It also gave her the courage to speak openly about her vision loss. During an onstage question, she said something out loud for the first time: “Competing in pageants is my driver’s license.”

That moment marked a profound shift, not just in how others saw her, but in how she saw herself.

That confidence began to carry into other parts of her life, too. In her senior year, Havah stepped onto a different kind of stage—her school musical, Grease. It was her first time participating in theater, and she landed the role of Marty, a character completely outside her comfort zone.

“I was so nervous,” says Havah. “But my director and cast were amazing. They recorded my lines for me, worked with me one-on-one so I never felt left out.”

For Havah, it wasn’t just about the performance. It was about belonging.

“I finally felt like I had a friend group at school,” says Havah. “That’s something I hadn’t really experienced before.”

Today, Havah uses her voice to connect with others across the country, especially young people navigating vision loss. Through social media, speaking engagements, and her growing platform, she’s helping others feel less alone.

“I’ve had girls reach out saying they want to compete because of me,” says Havah. “Or just to share that they’re also legally blind. That means everything to me.”

Her impact extends beyond the stage. Havah is also preparing to publish a children’s book inspired by her early experiences with vision loss, designed to help kids better understand what it means to see differently and to ensure more stories are accessible to the low vision community.

At the heart of it all is a message she wishes she had heard when she was first diagnosed.

“Being diagnosed with Stargardt is hard at first, and it's okay to be in a dark place,” says Havah. “But don’t stay there. It’s not something to be ashamed of —you can’t control it.”

Living with Stargardt has shaped every part of Havah’s journey, but it doesn’t define her limits. Instead, it’s become the very thing that fuels her voice.

“My goal is to be someone that other kids can look up to,” says Havah. “So they can think, ‘If she can do it, I can do it.’”

And every time she steps onto a stage, whether in a pageant, a theater production, or a room full of people hearing her story for the first time, she’s doing exactly that.