
Demis Courquet-Lesaulnier
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 transplant waiting list. He ranked second in line. His birthday passed. And then, 10 months later, he finally received his new heart. Now 15, Micah says the experience changed how he sees life — and opened his eyes to the toll it takes to be on a transplant wait list.
“Not everyone gets transplants often,” Micah says. “Getting a transplant has shown me how it’s affected other people.”
Micah, pictured below, was one of thousands of Americans each year who unexpectedly find themselves needing an organ transplant. Last year marked a new record in transplantation, with 48,000 Americans receiving a new organ. But there’s still a shortage of organs. And about 17 people die every day waiting for a transplant.

Desiree Rios for Word In Black
Word In Black’s “On Borrowed Time” series explored why there is so much mistrust among Black folks toward the organ donation process, what barriers block their access to care and the equity and ethical issues surrounding organ donation. We also put a spotlight on the Black lives changed through the transplant system.
Word In Black compiled a list of 10 common questions, and well-informed answers, to help explain the process of organ donation, procurement, and transplantation. Here’s what experts shared.
1. What does it mean to be a registered organ donor?
A registered organ donor is someone who has decided that, when they die, their organs or tissue may be donated to someone in need. Donors can decide which organs they want to donate, and any adult can register. People under 18 can register with a parent or legal guardian’s consent.
There are several places where adults can register. Any local Department of Motor Vehicles service location, through a local o