Courtnay Midkiff is 23 years old and on a mission—to walk across the U.S. to raise awareness for Fabry disease, a deadly genetic disorder that affects just 1 in 117,000 people.
When people ask me what I’m doing this summer and I tell them I’m walking across the country, the response is usually one of disbelief. What would possess you to do something like that, they ask? For me the reason was at first very personal. Now it has become so much more than that.
When I was eight years old I was diagnosed with Fabry disease, a rare genetic disorder that is caused by a lack of an enzyme that breaks down a lipid in the body. Without the enzyme, the lipid accumulates in cells throughout the body, causing cell damage. Early symptoms of Fabry include trouble sweating, stomach problems, fatigue, and chronic pain in the fingers and toes. As it progresses, Fabry can lead to potentially-life threatening complications such as kidney failure, heart attack and stroke. My older brother, who also has Fabry disease, had a stroke when he was only 26 years old. My mother also has Fabry disease.
Many people assume that living with a serious disease like Fabry keeps me from doing many of the things that other people my age do. But I try not to look at it that way. I try to focus on the ways that living with Fabry disease has actually made me a stronger person—such as teaching me to never give up. With Fabry disease I often experience chronic pain in my fingers and toes, but I try not to let that stop me from being active. I am an Eagle Scout and an avid camper and hiker. I enjoy biking, swimming, surfing, rock climbing and cliff jumping. Though there are days when I don’t feel well, I try to continually explore, travel and be adventurous. I want to prove to myself that I can do anything I put my mind to, but I also want to show others who have this disorder that they don’t have to let it stop them from pursuing their goals.
So on March 1 of this year I started my walk across the country, beginning in Virginia Beach, VA. I plan to walk all the way to Santa Monica, CA, traveling with no more than a cart filled with necessities, a sleeping bag, tent and of course lots of motivation! With this trip, I am also raising money for the National Fabry Disease Foundation, a nonprofit organization that supports Fabry disease research and advocacy efforts, as well as Fabry patients and their families. I’ve raised over $8,000 thus far.
As I write this, I’m in Texas – I reached Dallas after walking for about three months. I am just a bit less than half-way done in my travels. It’s been an amazing walk so far. I think the best part of this journey has been meeting many other people living with Fabry disease. Before this trip I had never met anyone outside my own family who had Fabry. Many communities have welcomed me with open arms and have encouraged me to keep walking. I’ve received free meals, travel gear and clothing. And at one point a family I met hosted me in their home, where I was able to sleep in a bed for the first time in many weeks. Throughout most of my journey I’ve been sleeping in a sleeping bag inside a tent and I typically make my own meals.
This journey has not been without its challenges. I get tired and sometimes I get lonely. Some of my friends have joined with me for part of the walk and visited some of the cities I’ve stopped in to keep me company. But other than that I’m really doing this alone. There are times when I’m sitting in my tent and I ask myself, “why am I doing this?” And I wonder whether I can continue on days when I feel pain in my fingers and toes. To stay focused, I remind myself that this journey is about so much more than me. It’s about connecting with people and inspiring other people living with Fabry disease to take care of their health and follow their dreams. And raising money so that someday there might be a cure for Fabry. And I remind myself that the chance to see America this way and meet so many people and help them understand Fabry disease is an amazing opportunity.
We have written before about Courtnay’s journey on The Good Feed Blog, here.
For more great photo’s and updates, see Courtnay’s Tumblr blog: The Fabrys Walkabout / Tumblr