3000-Mile Trek Across US for Fabry Awareness

One of my favorite scenes from Forrest Gump was the titular main character running across the United States. He got all kinds of press, as well as masses of people following him.

He runs, and people search desperately for a reason why he is doing it. He runs, and they see him as a leader.

I think, sometimes, people just need something or someone to believe in.

Even if it’s this guy. Source: www.giphy.com

Forrest Gump is just an inspired retelling of Voltaire’s Candide. In real life, no one would run (or walk) across 3000 miles of the U.S. without a reason. Even stranger, or more determined, would be someone who attempts this feat while suffering from a medical condition that renders them fatigued and prone to illness, with numbness in the feet and hands.

But, as Global Genes reports, that is exactly what a young man named Courtnay is doing.

Courtnay suffers from Fabry disease, a rare genetic condition that results in an abundance of globotriaosylceramide (a kind of fat cell). Sufferers cannot break down this type of fat cell, as they do not possess the type of enzyme that interacts with it.

People who have Fabry disease often suffer from fatigue, severe bouts of illness, an inability to sweat, stomach issues, and pain or numbness in the extremities, especially the fingers and toes. Severe cases can result in kidney failure, stroke, and even heart attack. Fabry is an extremely rare disease—only a few thousand people in the entire U.S. have this condition.

Courtnay spent six months crossing the U.S. He started in the city of Virginia Beach, VA (talk about starting at the edge). His journey has taken him across eight states on a southerly course.

During this trip, he has met hundreds of other people with Fabry, or, as he calls them, “Fabbers.” Before his cross-country trek, the only fellow Fabry patients he knew were his mother and brother. Now, he has an extended family of over one hundred. He has also gotten to see people caring and giving in a new way. People invite him in for meals or even a warm bed for the night.

When he needs to, he takes the time to rest, but his determination pushes him to continue. He has used his expedition as a way to raise money and awareness of his disease.

He has raised over $12,000 to date.

Though he has yet to inspire any t-shirt slogans or bumper stickers, you better believe he’s having a real impact on the people me meets.

Read more about this rare individual’s journey by clicking here.


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