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Courtnay Midkiff poses in front of the Verde River in Arizona along his walk across the country to raise money for Fabry disease, a rare genetic disorder. He started in Virginia Beach, Va. March 1 and will finish the journey this Sunday in Oceanside. Courtesy photo.
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Man set to finish cross-country fundraising walk in Oceanside

OCEANSIDE — Courtnay Midkiff dodged rattlesnakes on scorching desert roads. He trudged through the snow and was battered by rain that blew sideways in powerful winds. 

Through it all, he kept heading west on foot. Midkiff began his 3,000-mile journey across the nation on March 1 in Virginia Beach, Va. And this Sunday, he’ll finish the trip in Oceanside — on his 24th birthday.

“A lot of people I’ve just met are in disbelief when I tell them I’m doing this,” Midkiff said over the phone while walking along a highway in Temecula earlier this week.

He and a few buddies dreamed up the cross-country trip to satisfy a serious case of wanderlust about a year and a half ago. His friends, however, dropped out. But the trip took a personal turn — he realized a walk across the nation represented a chance to raise money and awareness for Fabry disease.

Courtnay Midkiff pets horses in Tennesse. Courtesy photo
Courtnay Midkiff pets horses in Tennessee. Courtesy photo

Midkiff, as well as his mom and brother, have the disease, a rare genetic disorder. For Midkiff, the disease means chronic pain in his fingers and toes. Plus, he overheats easily. For others, Fabry can lead to life-threatening complications like strokes, which his brother experienced last year.

So far, he’s generated $11,100 for the National Fabry Disease Foundation. And he has another major motive: to prove that those with Fabry can do whatever they set their minds to.

At times, the trek demanded superhuman levels of endurance. In Texas, Midkiff suffered from a nasty fever and fatigue. To make matters worse, the temperature soared to 108 degrees one day, amplifying his Fabry symptoms. In tears, he considered catching a flight home.

“When you’re sick, you just want to lay down in your bed and get a cold drink out of the fridge,” Midkiff said over the sound of cars passing by. “And pretty much my only option was laying down in a hot tent, drinking the warm water I had with me.”

But Midkiff, who amassed an online following by documenting his entire trip on his blog (, remembered words of encouragement from people all over the world.

“I had people tell me their 9-year-old son has Fabry disease, and I’m an inspiration to them,” said Midkiff, who lives in Richmond, Va.

“Going home would be the opposite of what I set out to prove,” he added.

A recent 110-mile stretch without any signs of civilization from Parker, Ariz. to 29 Palms, Calif. made up another trying leg of the journey.

Temperatures hovered around 115 degrees in the afternoons, leaving relatively cooler nights the only suitable time for walking. During the day, he curled up next to shrubs to take advantage of small patches of shade. As the sun circled the sky, he inched around to stay in the shadow.

Luckily, an electric lineman working in the area, who Midkiff met beforehand, drove by to deliver cold water throughout his five days in the desert. Still, dehydration remained a concern, along with snakes and scorpions.

“The desert is a place where a person should not be,” Midkiff said. “Everything is out to get you, from the sun to the cacti and the animals.”

While the weather was harsh at times, Midkiff said the people were anything but. He camped many of the nights, and new acquaintances across the country let him stay for a day or two here and there.

“You watch the news, you see the Boston bombing — all this terrible stuff,” Midkiff said. “Then people who you just met say stuff like ‘hey, you look like you could use a shower.’ And they invite you to their homes to stay in their extra room and treat you like family.”

Of those he connected with, one person really sticks out in his mind. In Knoxville, Tenn. he bonded with an elderly man who also has the disease. Midkiff later learned the man was considering stopping treatment due to losing hope. But he changed his mind after hearing Midkiff’s tale.

“At the beginning of the trip, I’d never even heard his name, but now I have a friend for life.”

Widespread recognition greeted him in some communities. For example, several weeks back, the Arizona Diamondbacks honored Midkiff during a pre-game ceremony on the field.

Midkiff previously traveled the country as a tour manager for the hardcore band (a style that’s a cross between punk and metal) Terror. During the walk, though, he picked up on details and people that he would have otherwise missed in a car, he believes.

Midkiff stumbled upon a gorgeous waterfall in Ozone, Tenn. Getting to know the friendly people in Indian reservations in New Mexico was also particularly memorable.

Before the journey, he gained a few sponsors to cover some of the expenses. Yet much of the trip was self-funded. He saved money over the years working various jobs. And he sold his car right before leaving.

Equipped with a stroller rigged to carry his tent, sleeping bag, clothes and a solar panel for charging his phone, Midkiff walked 25 to 30 miles per day on average. At times, he got lonely. Yet he often called friends and family “to stop myself from freaking out.”

Even though his cell phone got plenty of use, he had a lot of time for introspection.

“I love being in a group,” Midkiff said. “I don’t mind being alone at the same time to listen to music and sort through my thoughts.”

Midkiff noted he’s “always bounced off the walls” and had “plenty of weird and crazy ideas.” So his family was skeptical, and rightfully so he said, when he first announced his plans for the trek. They’ll join him, as well as friends, in Oceanside on Sunday when he completes his journey.

As of Monday, he didn’t have concrete plans for where in Oceanside his ceremonial dip into the Pacific Ocean will take place.

“I’m just excited to get there and be with people who mean a lot,” he said.

“I hope I inspire more people to donate to cure Fabry,” he added.

Donations can be made through his Tumblr website; 100 percent of the funds go to National Fabry Disease Foundation.


Laura Rice August 30, 2013 at 10:33 am

As a person who is very familiar with this disease, I applaud what you have accomplished. You are an AMAZING AND INSPIRATIONAL human being.

Tina August 30, 2013 at 12:30 am

Wonderful story of an amazing human being!

Bill Midkiff, Court's Dad August 29, 2013 at 4:08 pm

Great article, thank you.

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