Alan’s Story: Gaining Independence with Aira Technology

By Sally Higginson

Trust me when I tell you to grab a tissue. Or roll down your sleeves and get ready to wipe. Me? My eyes are welling up even as I type. Recently, I witnessed a miracle.

I’ll give you a little background while you look for a Kleenex. Twenty years ago, at the age of 8 weeks, my nephew Alan was diagnosed with Leber congenital amaurosis (LCA), a rare disease that limits retinal development. Holding her infant son, my sister Betsy and her husband David listened in disbelief as the retinal specialist explained that Alan would be visually impaired at best, and fully blind at worst. The doctor informed them there was no cure, no treatment, and no adaptive device to correct their son’s condition.

Like his sighted peers, Alan attended public school. His mobility instructor taught him to navigate familiar

parts of his world with his white cane. By sixth grade, he could walk to school by himself. Now a junior at Beloit College, he’s doing just fine. That’s not the miracle.

Not to dismiss Alan’s role in his accomplishments, but his successes have been in some part reliant on a team of people. Still, there are limits to his independence. Spoiler alert: here comes the miracle.

Last week, Betsy called me. “Get outside now. Alan is walking to the train station. By himself. He’s near the library. Run.”

I ran. Turning the corner, I saw my nephew, cane in hand, walking a route new to him. Betsy trailed

silently, about 10 feet behind.

“Hey Aunt Sally. Is that you?” Cue the tears. Remember, Alan is blind. He has never seen me coming his way. For 20 years, we’ve all come up to him and touched him, or spoken to him, or hugged him, letting him know we were there. For the first time, he “saw” me coming.

Alan was wearing an adaptive technology, and it was changing his life in front of my tearing eyes.

The technology is called Aira (eye-rah). According to their website, “Aira’s platform works on a wearable device similar to Google glass, that can be paired with a smart phone. The tiny camera mounted on the device [cool sunglasses] provides instant feedback to a trained Aira agent who can safely guide [a wearer] in any activity.”

Alan’s Aira glasses had arrived the day before. The device is free, and the glasses are free. Like a cell phone contract, users pay a monthly service fee based on the minutes they use. When it’s on, an agent sees a split screen. On one side is a GPS view, to map out the exact location of the route guidance. On the other screen, the agent sees the lens view from the user’s camera. Simple, yet genius.

I fell in step with Betsy, following Alan’s lead for the first time. He made it easily to the train station, then home via a different route. Since then, he’s walked to a local bagel shop and “read” menus. I asked Alan, “What do you like best about this?”

“I like walking somewhere that I’ve never walked to before, by myself, without learning the route. I like reading menus. I like finding people. I found you!”

I turned to my sister. “Well? What are you thinking?”

“It’s totally selfish. I want to be his eyes,” she said.

“Don’t you think you’ve been his eyes?”

“Yeah, I guess. And now I’m turning it over to somebody else.”

There wasn’t a dry eye between us.

Sofia Sees Hope is dedicated to ending the isolation that LCA families can feel after their diagnosis by sharing their stories. Read more here. Would you like to share your story? Email Danielle@sofiaseeshope.org