A 13-year-old had chest pains. A rare disease meant he was “close to sudden cardiac death.”

Dr. Brittany Clayborne’s 13-year-old son Micah came home from school one day in December 2023 with a complaint that sent shivers down his mother’s spine. Micah, an avid football player, refused to play outside because his chest hurt. This was alarming for Clayborne, who had a complicated medical history involving cardiac issues. She had suffered a heart attack during Micah’s premature birth at 34 weeks and had undergone multiple procedures to stabilize her heart function, including a heart transplant in 2018.

Concerned about Micah’s sudden chest pain, Clayborne wasted no time in taking him to a cardiologist the following morning. What they discovered was devastating – Micah’s heart was only functioning at 7%, putting him at risk of sudden cardiac death. He needed a pacemaker and defibrillator immediately, and a heart transplant was in his near future.

Further testing revealed that Micah and Clayborne both had Danon disease, a rare genetic condition that affects only a few hundred families worldwide. This condition is caused by mutations in the LAMP2 gene, leading to a buildup of waste in the body’s cells and causing the heart muscle to thicken, resulting in heart failure that often requires transplantation.

In October 2024, Micah received the life-changing call for a heart transplant. The surgery went smoothly, but not without a heart-stopping moment for Clayborne when she saw the donor heart being wheeled into the operating room. After a successful transplant, Micah, now 14, is back in school and doing well.

Inspired by his own experience, Micah and Clayborne founded Transplant Teenz, a virtual support community for teenagers awaiting organ transplants. Recognizing the lack of resources for teens in similar situations, they aim to provide a space for young transplant recipients to connect, share experiences, and receive support during a challenging time in their lives.

Through their journey, Micah and Clayborne have shown resilience, courage, and a deep sense of compassion for others facing similar struggles. Their story serves as a reminder of the power of community, support, and hope in the face of adversity.