The worst part is that the disease is progressive. That means if it goes untreated — and it often does because treatment is so expensive — it just gets worse and worse.
Courtnay, now 24 and an Eagle Scout, decided to do something about it. In an effort to raise awareness of the disease and also to raise money to fight it, Courtnay walked across the country. Literally. For real.
He began in Virginia Beach, Va., in March and started walking west until he got to Oceanside, Calif., in September. 3,000 miles. On foot.
“A lot of people I’ve just met are in disbelief when I tell them I’m doing this,” Courtnay said in one interview.
Along the way, Courtnay camped and sometimes relied on the kindness of strangers for a place to sleep. In the end, he raised more than $10,000 for the National Fabry Disease Foundation.