CHANDLER, AZ — This summer, a Chandler family is on an epic adventure: Embarking on an 8-week trek to national parks around the country where they'll dig for dinosaur fossils in Wyoming and search for sand dollars on the coast. The importance of these precious moments together came into focus in the fall of 2021.
“It was extremely hard at first, really stops you in your tracks,” said Kristina Johnston.
“It was kind of one of those moments where it doesn’t feel necessarily real,” said Stephen Johnston.
Stephen and Kristina’s 9-year-old son Luke, a little boy who trades Pokémon cards with friends, does karate, rides his bike, and lives life without fear, was diagnosed with Retinitis Pigmentosa. It's a rare eye disease that over time can cause patients to lose their sight entirely.
“This is hard for everybody here,” said Stephen, comforting his son during the interview. “That’s why it’s so important he sees all he can now just in case.”
It’s a painful subject they’re now determined to face together.
“We are all sort of seizing the moment and the opportunity. He see things and experience things that oftentimes people say I’ll get there someday and they never do,” said Kristina.
They’re doing it while raising attention and donations for their nonprofit A Race Against Blindness. The nonprofit funds some promising research into a cure for the cause of Luke's condition.
“We’re taking that challenge on and making sure it gets the opportunity to treat so many people who have this,” said Stephen.
They’ve got a little help from some big hearts back home too.
“We have to do something to help him out,” said one of Luke's friends Thursday.
Luke's friends on Saturday are hosting a lemonade sale near Gilbert and Ocotillo in Chandler to raise funds as well.
“He’s really kind,” said one friend.
“Like the best friend I could ever have,” said another. “This really upset me when this happened.”
But like Luke's parents, these children are using the difficult situation as motivation. They're hoping to sell as much lemonade as possible to send a message of love to Luke.
“When you have that kind of network behind you, that kind of support, friends family, it makes it really easy to push aside the doubt and focus only on the hope,” said Kristina.