Running Through the Valley of Fire to Fight Rare Disease

By Laura King Edwards

Nevada marked the 16th state in my quest to run all 50 for 30 million Americans fighting a rare disease. I dedicated my latest race to the memory of Henderson’s Hannah Ostrea, who lost her life to Gaucher disease type 2/3 before she celebrated her fourth birthday. Now Hannah’s family supports other Southern Nevada families who need the kind of medical equipment and services they needed during Hannah’s life. Through their Little Miss Hannah Foundation, they took a tragedy and turned it into something good.

Today fewer than 25 people ran the first leg of Rally in the Valley of Fire, a new, three-day stage race in Nevada’s Valley of Fire State Park. Our small group of runners boarded a single bus in a quiet parking lot this morning as cool raindrops fell from the gray desert sky not long after an invisible sunrise.

If you’re picturing a typical city road race, take that image and turn it upside down in your head. I ran this course in two hours and 42 minutes – a full hour longer than my personal record for the distance. In that time I took 100 photos, stopped to pee, drank paper cups of Heed and ate oatmeal cookies at the first of just two aid stations in the backcountry. I jumped over bighorn sheep poop and prickly bushes and rocks. I ran across the Fire Wave slickrock formation and through the bottom of a sandy wash.

Valley of Fire slot canyon

Running is pure. Running is something humans have done since our earliest ancestors roamed the African plains. Running is something you can do without any teammates or fancy equipment or advanced skills.

One thing I loved about the Rally in the Valley of Fire half marathon was its purity. No fancy expo or race day frills. No sponsor banners or music blasting through speakers. No chips or mile markers. No timing mats or even an official start line. Seconds before 9 a.m., Joyce, the race director and owner of Calico Racing, told us to stand in line with the nose of the bus and get ready for her signal to go.

Fire Wave slickrock

Small orange ribbons paper-clipped to cacti and scrubby plants and brilliant flowers bursting in the desert landscape marked our path. And at the end, runners feasted on a lunch spread with deli sandwiches and chips and granola bars and cookies and frozen chocolate milk, all prepared in a big rental truck parked at the finish line. We sat in plastic patio chairs and rested our muscles and shared stories and watched the sky turn from gray to blue over the sweeping valley.

I was in constant awe of the course’s indescribable beauty. I ran four paved miles, but much of the remaining nine miles and change took me away from manmade roads and established footpaths, instead following well-worn game trails.

Valley of Fire sandy wash

Experiencing places like Nevada’s Valley of Fire State Park always makes me grateful that I have the ability to see. Even after Batten disease stole my sister’s vision, she experienced places I visited through my stories. But now she can’t communicate any longer. While I still talk to Taylor, she can’t talk to me, and I’d give anything to know what she’s thinking.

I have a long way to go before I can say I’ve run a race in all 50 states, but the best part of this long journey is that we’ll be treating kids in a gene therapy clinical trial before I finish. Taylor’s story had a lot to do with making that possible. My sister might have lost her legs to Batten disease, but she never lost her courage.

That’s why I’ll never quit running or fighting for Taylor, Hannah and millions of people like them.