May 5, 2025

Alexis Nickerson: Fostering Resilience

When Alexis Nickerson’s son, Harry, was nine years old, everything changed in an instant. Harry, a talented gymnast since the age of two, ran straight into an bar. At first, it seemed like a simple accident. But as Alexis thought back to a few other mishaps Harry had in the weeks before, a deeper worry began to take root. Trusting her instincts—and knowing firsthand what living with vision loss meant, Alexis took Harry to see an ophthalmologist. That’s when they received the life-changing diagnosis: retinitis pigmentosa (RP). Harry was declared legally blind.

The diagnosis was heartbreaking. Alexis vividly recalls sitting alone at that first ophthalmologist’s appointment, knowing instinctively to ask every question she could—and letting herself feel the emotional weight of it later. “It was devastating,” she says. But she also knew they needed to move forward. Their ophthalmologist pointed them to Fighting Blindness Canada (FBC) and clinical trial websites—critical sources of information and hope during those early, uncertain days.

Telling Harry was another challenge. They were advised to be honest and let Harry ask questions at his own pace. One day, he asked the question Alexis had feared: “Mom, am I going blind?” Alexis answered carefully—not promising what she didn’t know, but reassuring him he would do great things, even if life might look different than they had once imagined.

Over time, Harry’s confidence grew. He discovered goalball and joined peer groups to connect with others who understood his experiences. Then, in Grade 6, he shared publicly for the first time that he was legally blind—a moment that sparked newfound self-assurance. Today, at 16, Harry is a strong advocate, speaking at schools and inspiring others with his openness and resilience.

Though the RP has progressed, and Harry now uses a white cane in certain situations, he continues to pursue his passion for gymnastics. His coach has adapted to support Harry, to compensate for the fact that Harry can’t see everything at once, as his peripheral vision has been affected. Harry’s coach, for example, claps to signal when the ground is near so that Harry can land safely. “There was never a question about whether he would continue,” Alexis says. “They said, ‘We’ll make it work.’”

Fundraising for vision research became another way Alexis and her family turned the challenges they faced into action. Participating in FBC events like Cycle for Sight, they rallied their community together, raising critical funds and fostering hope for future treatments.

Alexis is grateful to her family and friends, and to Harry’s teachers, coaches, and physicians, as well as to FBC for all the support she and Harry receive. The ability to connect with others and know that they are part of an understanding community have enabled Harry to thrive.

Harry himself is a budding researcher/developer, having clinched a silver medal at the Canada-Wide Science Fair (CWSF) 2024 for his groundbreaking project focused on using AI to diagnose RP. He is entering his third CWSF this year.

To other parents just beginning this journey, Alexis offers this advice: “Let yourself grieve. Then make a plan. Find community—for your child and for yourself. Help your child stay connected to what they love, and never stop doing the things that bring you joy together.”

This Mother’s Day, Fighting Blindness Canada celebrates the strength of mothers like Alexis who face uncertainty with courage, foster resilience in their children, and help light the way to change the future for people living with a blinding eye disease.