What started as a normal December afternoon in 2023 quickly turned into a medical emergency that would forever change the life of 13-year-old Micah Clayborne and his mother, Dr. Brittany Clayborne.
After coming home from school, Micah… usually eager to play football… told his mom he couldn’t. His chest hurt.
“As soon as he said that, my heart sank,” said Brittany, a heart transplant survivor herself. “Given my own history, I knew this wasn’t something to ignore.”
Dr. Clayborne, who gave birth to Micah prematurely in 2010 after suffering a heart attack during labor, had battled peripartum cardiomyopathy… a rare form of heart failure triggered during or after childbirth. Over the years, her condition worsened, requiring multiple surgeries, an LVAD heart pump, and eventually a full heart transplant in 2018.
Because of her medical past, Micah was monitored by cardiologists throughout childhood with no previous signs of concern. But this time was different. Brittany rushed him to a specialist the next morning.
Within 45 minutes of his appointment, Micah was rushed to the cardiac ICU at Children’s Medical Center Dallas. His heart was functioning at only 7%.
“He was on the verge of sudden cardiac death,” Brittany recalled. “They told me he’d need a pacemaker and defibrillator immediately. And eventually, a heart transplant… just like me.”
Micah was diagnosed with Danon disease, an exceptionally rare, inherited genetic disorder that damages the heart and muscles. It affects only a few hundred families globally. Shockingly, further testing revealed that Brittany also has the condition. They are now believed to be the only documented African-American family living with Danon disease.
According to Dr. Rakesh Singh, pediatric heart transplant specialist at NYU Langone, the condition is caused by mutations in the LAMP2 gene, which disrupts the body’s ability to remove waste from cells. This toxic buildup leads to the thickening of heart muscle and early-onset heart failure… particularly in males.
“Medications typically don’t help much,” Dr. Singh said. “Most male patients need heart transplants before their 30s. It can also lead to cognitive or vision issues.”
Brittany, who once faced her own battle for life, now finds herself watching her son go through the same.
“When you’re told you might die, you can prepare yourself to fight. But when it’s your child? That breaks you in ways you can’t explain,” she said. “I know what’s ahead for him… the surgeries, the recovery, the emotional toll. It’s heartbreaking.”
