For the past three months, 23-year-old Courtnay Midkiff has been on a journey, walking across the country for a cause that is special to his heart.
Courtnay suffers from an extremely rare genetic disorder called Fabry disease—there are only a few thousand known patients in the United States. He is leading an effort to help more people learn about Fabry—by walking across the United States this year. With little more than a sleeping bag and camping tent, he began his journey in Virginia Beach, VA in March. He is now in Texas. With many miles yet to go, he will end his amazing walk in Santa Monica, California. Thus far dozens of families and communities in the cities he has visited have welcomed Courtnay, giving him meals, encouragement, and even a warm bed. Along the way he is meeting with other families affected by Fabry and speaking out to help more people learn about this serious illness. He is also working to raise money for the National Fabry Disease Foundation (NFDF), a nonprofit organization that provides education and support for people living with Fabry disease. In just a month, Courtnay has raised over $7,000.
So many people out there have never even heard of Fabry disease. With this walk, I want to empower other people living with this disease to let them know that it doesn’t have to stop them from achieving their goals.
Fabry disease is caused by a deficiency of an enzyme that usually works to clear fatty substances from the body. In Fabry disease, the absence of the enzyme causes this fatty substance to accumulate in the blood and blood vessel walls, leading to constriction of blood flow through the vessels. Symptoms range from the inability to sweat, stomach problems, fatigue and chronic pain in the fingers and toes, to severe symptoms, including potentially life-threatening impacts such as kidney failure, heart attacks and strokes. Both Courtnay’s mother and brother also suffer from Fabry disease and his brother recently had a stroke as a result of the disease.
Photos: Courtesy of The Fabrys Walkabout/Tumbler