Running Against the Odds: The Journey of Skyler Tulley

By Skyler Tulley

When Skyler Tulley laces up his running shoes, he’s not just preparing for another long run—he’s pushing against the limits that his body has tried to set for him since birth.

Tulley was born with severe Hemophilia B, a rare bleeding disorder caused by a deficiency of clotting factor IX. For most people, a bruise or a bump heals quickly. For Tulley, injuries linger, pooling blood in joints and muscles, often leaving him in pain until his next infusion of clotting factor. Yet instead of slowing down, he’s chosen to live life at full speed.

“I refused to see myself as fragile,” Tulley says. “Hemophilia has never defined what I can do. It’s only shaped how fiercely I fight to do it.”

Growing Up Fearless

Some of Tulley’s earliest memories of resilience were forged at Camp Honor in Phoenix, Arizona, a summer camp for kids with bleeding disorders. While many participants were hesitant to join physically demanding activities, Tulley leaned into them. “I respected their choices,” he recalls, “but I resisted falling into that mindset. I wanted to live without fear.”

That determination carried into his teenage years. He dabbled in football, pushing himself onto the high school team despite the risks. Injuries eventually forced him off the field, but he refused to give up on sports. Instead, he found balance in baseball and weightlifting—though not without setbacks. “I remember coming home with my entire hip black and purple after a fall, or feeling a sharp ache in my chest from a minor bump at the bench press,” Tulley says. “Each injury taught me patience, caution, and resilience.”

The Road to Endurance

As an adult, Tulley carried that same spirit into new challenges. Weightlifting remained part of his routine, but he found his true passion in running. In 2024, he completed his first 10K—a milestone that sparked a deeper obsession with endurance racing. Soon after, he paced his coach through the grueling Cocodona Ultramarathon, logging 80 miles in three days.

That was just the beginning. He has since completed several ultramarathons, including the Rose Canyon Ultra 50K in Utah and the Beaverhead Endurance Run 55K in Idaho. The Beaverhead, in particular, tested his limits. “There was a stretch with six false summits,” Tulley recalls. “Every time I thought I’d reached the top, another climb appeared. I pressed on through tears, even as my pace slowed to a crawl.”

What’s Next

Now, Tulley is preparing for his biggest test yet: the Redwoods 100-Mile Challenge. Training for such a race means hundreds of miles on the trail—and, for him, the added reality of managing spontaneous bleeds in his knees and ankles. Without regular doses of factor IX, his body couldn’t sustain the punishment of long-distance running.

Still, he wouldn’t trade it. “Running gives me freedom,” he says. “It’s where I prove to myself, over and over, that Hemophilia can’t stop me.”