by Anissa Durham

This article is part of “On Borrowed Time” a series by Anissa Durham that examines the people, policies, and systems that hurt or help Black patients in need of an organ transplant. This story is copublished with The Markup.

Teenagers aren’t supposed to struggle to breathe.

But two years ago, Micah Clayborne, a then-active 13-year-old middle school tennis player, knew something was wrong. Still, he pushed through the symptoms — persistent sweating and shortness of breath — for six months before finally telling his parents. They rushed their son to the hospital. Within days, doctors diagnosed Micah with Danon disease — a genetic condition that thickens the heart muscle.

His heart was failing — and he was dying.

Within weeks, doctors added his name to the national heart

See Full Page