A Gilbert Family’s Mission to Save Their Son’s Sight
When Stephen and Kristina Johnston first became parents, they never imagined their journey would lead them to launching a nonprofit that could change the future of childhood blindness. But for this Gilbert family, including 11-year-old Luke and 9-year-old Tyler, their story has become one of deep resilience, bold action, and unwavering hope.
Luke was born after a healthy pregnancy, though doctors noted a small physical anomaly: polydactyly, or an extra digit. It wasn’t initially cause for alarm, but as Stephen and Kristina, both healthcare professionals, watched their son grow, subtle vision changes and developmental concerns raised red flags. “We were told to keep an eye on him,” Kristina recalls. “And eventually, between the ages of 7 and 8, we received the official diagnosis.”
Luke is expected to be legally blind by the time he turns 18.
“Nothing ever prepares you when it’s your own child,” says Stephen, a radiologist and the nonprofit’s first donor. “Being in healthcare, I know how short life is. We had to take advantage of the time we have—not just to try to save his vision, but to let him experience the world.”
That sense of urgency became the spark for what is now A Race Against Blindness, the family’s nonprofit aimed at funding groundbreaking research for inherited childhood blindness. Just 2.5 years into their mission, they’ve already granted $3 million to kickstart a clinical trial that could change the future—not just for Luke, but for children everywhere facing similar diagnoses.
Kristina, who left her career as a legal nurse consultant, now works full-time for the nonprofit and homeschools Luke. “We didn’t know anything about the school system or advocacy at first,” she says. “But we realized we had to shift our whole approach. We reprioritized everything—education, time, experiences. It became about living in the now.”
Their family life changed dramatically. Instead of waiting for the elusive “someday,” they began embracing the present. “That first summer after Luke’s diagnosis, we took a big trip up the Pacific Northwest,” Stephen recalls. “Rainforests, ocean sites, fossils—everything. We wanted him to see as much as possible while he still could.”
Luke’s sister Tyler, 9, is his fiercest supporter. “If anything ever comes up that might affect Luke negatively, she’s the first to step in,” says Kristina. Though Tyler may be a carrier of the same condition, she doesn’t currently have it. What she does have is compassion and courage beyond her years.
“There’s no playbook for how to tell your child they may lose their sight,” Kristina says. “We chose honesty and transparency in a way that wasn’t scary. Luke has handled it with a positive mindset. But we’ve seen the hard moments too—when it overwhelms him emotionally.”
Still, the family keeps moving forward—riding the waves of hope and heartache. “It’s not always easy,” Stephen says. “There are good days and bad days. You have to be okay with not being okay sometimes.” Kristina adds, “You get very comfortable being uncomfortable. But there’s no alternative to hope. We won’t quit on our kid.”
Hope, though, is only part of the equation. Action is what drives them. With medical backgrounds and a clear mission, they’ve poured their energy into a movement that’s gaining momentum. “We knew this was bigger than us,” Stephen says. “It may not help Luke in time—but it could help another child. That’s reason enough.”
Looking ahead, the family is focused on amplifying their mission. They hope the $3 million grant they provided to researchers leads to a human clinical trial in the next year; a breakthrough that could alter the trajectory for children like Luke.
Their advice to other families facing similar diagnoses? Feel everything, and then start finding your people. “You don’t have to do it alone,” Stephen says. “There’s a community out there. And if we can be a part of that for someone else, then we’re doing something right.”
To follow their journey or get involved with Race Against Blindness, visit araceagainstblindness.org
