By Laurie Lattimore-Volkmann
Kai Owens is like any 13-year-old boy.
He loves hanging out with his friends at The Clubhouse, jamming to Twenty-One Pilots and playing Pokémon Go. Like any teenager, he pushes the boundaries with his parents, craves finding his physical limits in action sports, and of course, gets slightly nervous when talk of cute girls comes up.
But unlike most 13-year-olds, Kai is legally blind – barely seeing what’s in front of him.
Not that that is stopping this kid.
“If I want to do something, I just do it – whatever it takes,” says the new eighth-grader at Southeast Bulloch Middle School in Statesboro, Ga. “And most of the time, I do it better than sighted kids.”
He’s not being conceited; he’s being honest.
Whether it’s a determination to not let his condition get the best of him or just typical teenage invincibility, Kai thrives on proving he can do things deemed impossible, even without seeing.
His “condition” is retinitis pigmentosa (RP), a rare and usually inherited degenerative eye disease that causes severe vision impairment. Where most of us have a wide range of vision – near, far and peripherally – Kai sees the world as a picture with many pieces missing and hardly any detail.
There is no cure yet (though gene therapy and stem cell research is in the works), and chances are high that the limited vision he has currently could disappear altogether.
“Sometimes I get anxious about losing my sight completely,” Kai said. “Then I know I’ll just keep doing what I’m doing now or figure out a way to keep doing it.”
Finding a Way to Play
Ever since Kai discovered he had RP more than three years ago, he’s been “figuring out a way.” And that has included finding ways to skimboard across the waves on a crowded beach, continuing to do gymnastics and tumbling, cycling, skateboarding down ramps, and especially taking on new challenges. With continual support from his family as well as advocates such as his psychologist, Joe Kropp, Kai is always encouraged to see what else he can do, rather than worry about what he cannot.
“I’d really like to try snowboarding,” says “No Fear Kai,” as he’s known to his friends.
A fellow skimboarder who overhears Kai’s snowboard wish, yells across the beach, “Yo, dude. You’d be awesome at snowboarding.”
Leave it to a nearly blind 13-year-old to remind us all that disabilities are just challenges to be overcome, not roadblocks to turn us away.
That’s certainly a lesson Kai’s mom, Kim Hammersmith Owens, has been learning ever since Kai was diagnosed with RP and the threat of complete blindness has been looming on the horizon.
“We have moments that totally take our breath away because it’s a progressive disease,” Kim said, acknowledging that just when they get used to the situation, Kai will realize there’s something else he can’t see or can’t do, which requires readjustment.
But Kai adjusts quickly, so Kim and her husband, Chris, are following his lead.
“If he wants to do it, we let him do it,” she said. “And we get creative to make it as safe as we can. We just sit back and say, ‘OK, how are we going to do this?’”
With tumbling – something Kai really got into after his diagnosis – he has coaches who can spot him, and he relies a lot on his aerial awareness, which is crucial for flipping through the air anyway.
When it comes to cycling, Kai now rides tandem with big brother, Cash, who guides from the front seat – an adaptation both really enjoy.
For skimboarding, Kai wears a neon rash guard that says “Blind Athlete” to alert fellow beach-goers. He also has a special board with bright colors – custom made from Zap Skimboards – to help him see it better.
To Kai, these are just slight modifications so he can keep having fun. To his parents, these are survival techniques – maybe as much for them as for their son.
“I really have seen how amazing the human spirit is,” Kim says. “And I’ve seen how resilient my son is. It’s been a bittersweet process.”
The biggest struggle for all involved was at the very beginning, when Kai’s behavior changed drastically and they couldn’t figure out what the problem was.
After months of multiple doctors, counselors, and varied diagnoses, Kim began to notice that Kai no longer had any interest in reading – an odd occurrence for her then-9-year-old. Then one day, when she asked Kai to write his Christmas list for Santa, she saw him start in the middle of the page.
“I told my husband, ‘I don’t think he can read,’” Kim recalled.
So during Christmas break, Kim asked her very competitive son to grab his favorite book so she could “time” how fast he read a page. Instead of reading, Kai broke down in tears.
Suddenly, his constant fidgeting in school and his continual eye-rubbing made sense. Kai wasn’t anxious or stressed or deeply disturbed; he was having trouble seeing.
Eventually, with the help of Dr. John M. Devaro in Savannah, Ga., Kai learned he had pigment deposits that were causing a breakdown of the retina, the part of the eye that captures images. Though not a diagnosis most people want to hear, Kai and his family were relieved to finally have a concrete problem to deal with.
“It was just such a relief for him to know,” Kim said of her son. “His personality totally came back.”
And Kai embraced it immediately. Unashamed of the sight issue from the get-go, when friends would comment that Kai couldn’t do something, he’d simply respond, “Dude, I can’t see.”
That’s pretty much been Kai’s approach ever since – he just deals with it. He learned Braille, adapted his sporting interests, figured out how to continue his hobbies, and moved on to the next challenge.
And his no-nonsense approach is working.
Despite going from 20/20 to legally blind in a year’s time, Kai has maintained the highest GPA in his class the last three years, skimboards and tumbles any chance he gets, still jams on the drums, and holds his phone close to his face to see Pokémon.
“When we allow ourselves to think about the future, sometimes we’re scared,” Kim admits. “I know at some point there will be an outcome I’m not looking forward to…but I am learning to embrace the moment.”
She has to, after all, because Kai insists on it – not in word but in deed.
“He doesn’t have to work on it; he just gets it,” Kim says with a laugh. “He’s just out here enjoying the surf and sun.”
It’s not that Kim minds challenges. She likes solving problems. But from the very beginning, navigating the uncertainty of the issues followed by the red tape associated with adapting Kai’s environment for school and extracurricular activities to his ever-changing needs, has definitely been overwhelming.
But the one place of refuge for all involved has always been athletics.
“In the sports world, we never run into people saying he can’t do it,” she notes. “Instead it’s just, ‘How can we make this work?’ It’s such a blessing.”
Being ‘That Guy’
One such recent blessing was skimboarding camp at Tybee Island this summer with professional skimboarder and former world champ, Austin Keen.
When Kim contacted SkimTybee about the camp to explain Kai’s blindness, they were totally cool with it, just as she and Kai expected.
“It’s definitely a first for us, and amazing, honestly,” Keen said of his legally blind camper. “To find out he has a condition that’s progressive, and he has zero fear of what’s going to happen – his attitude is just unreal.”
Keen and his camp co-director Benji Sanders said they purposely treated Kai just like any other kid out there, which served as an excellent example to the others – as well as to Keen and Sanders.
“It inspired me actually,” Keen said. “His attitude of just going for it, being happy for whatever you have…that’s awesome.”
And Keen believes Kai could even be “that guy” – the one who leads the charge in showing other blind kids that skimboarding is more than possible for them too.
“With the mentality he has,” Keen said, “there’s no way this dude will be stopped.”
In fact, this 13-year-old dude recently started his own charity, Kai’s Comforts, to collect soft, highly textured blankets and pillows for kids living at schools for the blind.
When Kai was first experiencing symptoms of RP, he didn’t realize something was wrong, but he did feel anxious at night because things were blurry and suddenly unfamiliar. Without knowing the reason, Kai surrounded himself with soft, comforting things in his bed to ease the anxiety. Now he wants to help other blind children feel the same security.
Kai doesn’t really see himself as anything other than just another cool dude among his peers, but he definitely knows his example can be helpful – and he hopes friends follow his lead.
“I don’t really think about it,” Kai shrugs when asked if he’s kind of an ambassador for living life to the fullest – something Keen would certainly endorse. “But I’d tell everyone to do whatever you want to do in life and don’t let anything hold you back.”