The first thing Leslie Dow said when her middle son told her he couldn't see was, "Pull over."
It was three years ago, and Dow was visiting her son, Thelen, in Boulder, Colo. Twenty-one-year-old Thelen was driving them through the mountains when he said, "Mom, I can't see anything. Everything here looks like fluffy green clouds."
After she took the wheel, Dow immediately drove Thelen to LensCrafters. "They kept re-evaluating him; we were there for hours," she says. "Eventually the optical technician came out and said, 'We don't have the tools to figure out what his vision is.' It's that bad? The optometrist said she thought he might have keratoconus, but she wasn't sure and told us to go to an ophthalmologist."
The next thing Dow did was whip out her phone to look up keratoconus, since she'd never heard of it. The first website that came up was the *National Keratoconus Foundation.
When Thelen moved back to Northern California nine months later, their family doctor referred him to an ophthalmologist, and he was quickly diagnosed with keratoconus.
"My oldest son was diagnosed with Type 1 diabetes during his first year in college," Dow says. "As bad as diabetes is for Philip, he has it completely under control. Everybody knows about diabetes. Because nobody knows about KC, it's very frustrating. Even when you try to explain it to someone, they just look at you like you're a bug. People don't understand how bad it is to not be able to see."
That's where the NKCF website has been of greatest use to Dow. "When I first saw the image on the homepage that shows you what somebody with keratoconus sees, I must have stared at it for a good five minutes. I can't imagine looking at the world like that," she says.
"Whenever anyone asks, I immediately send them to the NKCF website so they can look at that image to see what his vision is like. That really helps a lot."
In the three years since his diagnosis, Thelen has relied on glasses to maintain his vision, which has stabilized, and is currently looking into corneal crosslinking. "He walks around the house trying to find his glasses. He literally can't find his glasses without wearing his glasses," Dow says with a characteristic laugh. "Thelen is one of these great people who, when he walks into a room, will know everyone in the room and their life story within five minutes. He's naturally gregarious and really outgoing."
Those seem to be traits he inherited from his mother, a molecular biologist with a PhD in chemistry, a published author of a romance/science fiction book, a blogger and a chicken farmer (visit her hilarious website, fabchicks.com for more on the last two).
In her spare time, Dow is doing a solo 1,000-mile hike of the Pacific Crest Trail to raise money for The Discovery Eye Foundation and NKCF.
"I'd already decided to do the hike when I was talking to a friend about her participation in the AIDS Ride and a fundraising party she was planning for it," she says. "I thought, 'Wait a minute, she's riding 500 miles, but I'm walking 1,000! Surely I can raise some money for somebody!'
"I originally thought about raising money for diabetes, but everybody knows about diabetes. Nobody knows about keratoconus. So this was an opportunity to not only raise money, but also make sure everyone knows about it."
Her goal is to raise $5,000 — so far she's raised $850 — but that's not necessarily her top priority. "If I can raise awareness, then raising money becomes simpler for everybody," she explains. "I've been so floored by how nobody knows about this disease. One in 2,000 people is just not that uncommon."
Dow began hiking on July 26 and figures it should take just more than two months to walk 1,000 miles. Her map started at the bottom end of the Sierras, skirts Mt. Whitney, heads through Yosemite National park, around Lake Tahoe into the Cascades, around Mt. Shasta, and finishes in Ashland, Ore.
She is wearing DEF and NKCF branding and soliciting donations (visit her Causes page to donate) during the hike). "I'll ask everyone I meet as I go," she says. She has a satellite communicator and sends pictures to her blog, Twitter, Facebook and elsewhere as she goes.
Thelen is "holding down the fort" at home in the Santa Cruz Mountains while Dow is hiking, mailing his mom re-supply boxes along the way. "He's pretty excited," Dow says, "Especially because he has to take care of the chickens."
To learn more about the Dows, read the NKCF spring profile of Thelen.
Posted August 2013
*The National Keratoconus Foundation became a program of the Gavin Herbert Eye Institute, UC Irvine in 2016.