What could be worse than learning you have a rare brain disease that could end your days as a world-class rock climber?
Learning that your 19-year-old twin sister has it, too.
Jesse and Tyler Youngwerth confronted their diagnosis this summer just as they’ve scaled some of the toughest rock faces in the world.
Now, after intricate surgery performed by a team of specialists in California, the Colorado Springs residents are working to regain their strength and retrain their reflexes so they can assume their status among the top climbers in the bouldering world.
Moyamoya, which affects 1 in 4 million, sneaked up on the young women, attacking Tyler during the middle of the Teva Games in June.
“I started to lose feeling on the right side of my body; then the right side of my face started to go slack,” she said. “It was weird. I didn’t know what was going on.”
Jesse felt fine during that competition. But a few weeks later, after doctors diagnosed Tyler with the rare genetic condition (their parents do not have the disease), they examined Jesse and found the same problem.
“Basically, arteries that bring blood to the brain collapsed and tiny capillaries tried to take over,” said the twins’ dad, Pete Youngwerth. “And capillaries just aren’t big enough to do the job.”
“We weren’t getting all that blood flow, all the oxygen to our brains,” Jesse said.
The sisters had noticed symptoms of moyamoya — suddenly feeling faint or enduring short spurts of blurred vision — but didn’t imagine there was something seriously wrong.
“You think you’re stressed or maybe you’re not eating right or haven’t gotten enough sleep or something,” Jesse said. “You don’t think, ‘Oh, I bet something’s wrong with my brain.’”
The sisters chuckle, as if to say, “Yeah, it sounds serious, but it’s not that big a deal.”
After learning the brain disease was a big deal, they flew to California for surgery in July at the Moyamoya Center at Stanford University Medical Center, where specialists rerouted arteries from behind their eyes and ears to the tops of their brains.
As they have done most things in life, they went into surgery side by side.
“But they worked on my right side first and Jesse’s left side first,” Tyler said. “During that week between surgeries, it was easier for everyone to tell us apart.”
The sisters look at each other and laugh, softly and in unison, which they do often.
Having a close confidante appears to give each a boost of confidence, an openness to anything life has to offer.
On a recent October morning at Ute Valley Park, their bond is evident. While one climbs, the other acts as spotter, scanning the rock face and pointing out handholds or toeholds better seen from a distance.
“Reach out, another 2 inches,” Jesse says as Tyler hugs a sandstone face, right arm outstretched, her fingertips crawling the surface in search of the slightest bump to grip.
“There you go, nice job,” she says after Tyler swings herself 180 degrees around a lip to the top of a boulder.
There’s a constant, gentle patter between them as one, then the other, ascends a 30-foot wall in less than a minute, their movements controlled, graceful.
Tyler, the older sister by a few minutes, usually climbs a route first.
“Especially if it’s a high one; I want to make sure it’s good for her,” she said.
They’ve scaled these rocks — and every boulder worth climbing in Colorado Springs — many times since moving here from Arizona eight years ago with their parents, Pete and Lisa.
The Youngwerths all climb, and the girls grew up scrambling on rocks across the Southwest.
“Our weekends were spent climbing. Our vacations were all about climbing. We even had a rock wall in our garage,” Jesse said.
Since conquering their first routes at about age 6, Jesse and Tyler have competed across the U.S. and have made names for themselves around the world.
But this summer was different. July was a blur of hospital rooms and surgery suites, followed by weeks of recovery and rehabilitation.
“It was devastating at first, because we worried about their survival,” Pete Youngwerth said. “It was brain surgery, after all. It was a rough summer, but things are looking really good now.”
Doctors said they’d have to wait three months before trying to climb again, but Jesse and Tyler were back on Colorado Springs’ indoor rock walls in August.
They’re a little impatient, these two. Despite a calm demeanor, you sense a restless energy, a desire to get outside and see what’s beyond the horizon, what the world looks like from the top of a rocky spire.
“We’ll do it,” Tyler said. “It just takes time. You want to get right back out there because you know you’ve done all these climbs before. It’s tough trying to be patient.”
The local climbing community has been supportive. Fellow climbers traveled to California to boost their spirits after the operations, and local climbing gyms hired them as coaches to keep them active in the sport as they recover.
That support is one of the things they most love about the activity.
“It’s fun to challenge yourself, physically and mentally, but the best part of climbing really might be the people,” Jesse said. “We’re all one big family. Even in competitions, people help each other.”
“And then you just, you know, hang out with everyone after,” Tyler added. “You don’t even have to speak the same language with other climbers to know you’ll be friends.”
The reception at their first competition since surgery, the 16th annual Yank N Yard last month in New Mexico, was warm. Jesse placed fourth in the women’s open division; Tyler, sixth.
It seems certain that with just a little more support from one another, they’ll soon be back on top.
What could be better than that?
• 2011 graduates of Cheyenne Mountain High School
• Film majors at UCCS who aspire to make adventure sports documentaries
• Favorite place to climb is Fontainebleau, France, but rock formations in Utah also draw high praise
• Favorite climbs in Colorado include Eleven Mile Canyon, Boulder, Estes Park and Shelf Road
• Volunteer teachers at Kids for Climbing, a program that introduces kids to the sport
• Other interests include biking, slacklining, kayaking, skiiing, snowboarding and yoga
• Identical tattoos on the inside of their wrists: their surgeon’s name written in Japanese
•Moyamoya translates to "cloud" in Japanese; brains of people with the disease appear to have a cloud, which prompted the name