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

CBS News

16 hours ago

When Dr. Brittany Clayborne's 13-year-old son Micah came home from school in December 2023, she asked him if he wanted to play football outside. It was one of his favorite hobbies. But Micah said he couldn't.
"He said, 'My chest hurts,'" Clayborne recalled. "I was like, 'What do you mean your chest hurts?'"
The words were terrifying to Clayborne, who had a long history of cardiac issues. She gave birth to Micah in 2010. He was born premature, at 34 weeks, and during the delivery, Clayborne had a heart attack. She spent weeks in the cardiac intensive care unit and was diagnosed with peripartum cardiomyopathy, a rare form of heart failure that happens at the end of pregnancy or shortly after giving birth. During Micah's childhood, her heart continued to weaken. She had a pacemaker and defibrillator implanted to maintain her heart rhythm, and a mechanical LVAD pump to help her heart circulate blood. In 2018, she had a heart transplant.
Because of Clayborne's history, Micah had seen a cardiologist regularly as a child. There were never any issues. But Clayborne knew the chest pains could be a warning sign, and she brought him to a cardiologist at 10:30 a.m. the next day. By 11:15 a.m., Micah had been admitted to the cardiac ICU at Children's Medical Center Dallas.
Tests found Micah's heart was functioning at just 7% and that he was "very close to sudden cardiac death," Clayborne said. Just like his mom had, Micah needed a pacemaker and defibrillator. He would eventually need a transplant, too.
"When they tell you that you are going to die, you're like, 'OK, I can fight this,' but when they tell you your child is going to die, that's a whole different set of emotions. Not only are you helpless, you are hopeless," Clayborne said. "And as a person who went through it, knowing what his future looks like, knowing the surgeries that are coming up and what the recovery from those is like, is incredibly difficult to try to explain to your child. It was devastating."
An incredibly rare diagnosis
Doctors tested Micah to figure out why a previously healthy teen would be having such severe heart problems. They found that he had Danon disease, a rare genetic condition that affects only about 300 families worldwide. Further testing found that Clayborne also had the condition. The Claybornes are the only documented African-American patients with the disease.
Mutations in the LAMP2 gene cause Danon disease, said Dr. Rakesh Singh, the medical director of the pediatric heart failure and transplantation program at NYU Langone's Hassenfeld Children's Hospital. The gene creates a protein that gets rid of excess waste in the body's cells. The mutation interrupts that process. The inability to get rid of cellular waste causes the heart muscle to thicken, causing the organ to work less efficiently and creating a form of heart failure that "doesn't respond well to medications," Singh said.
"It's not uncommon for these children to require heart transplantations in their 20s," Singh explained. Danon disease patients may also have neurological issues or eye problems.
The disease is more common in male patients than female ones, Singh said. Male patients are more likely to have severe disease.
A long-awaited transplant
After Micah had the pacemaker and defibrillator implanted, he was put on the national waiting list for a heart transplant. In October 2024, Clayborne received the call they had been waiting for. Micah was playing video games when she gave him the news.
"I was like 'Yes, this is it, I get a second chance,'" Micah said.
The family headed back to the Children's Medical Center Dallas. As Micah underwent surgery, Clayborne waited nervously. She only became more panicked when she received an update from the transplant team: Micah's heart had been removed, but the new donor heart was still several minutes away.
"I am in my brain freaking out. I got out of the waiting room, and I was like, 'I just have to go take a walk.' I wasn't going anywhere specific," Clayborne recalled.
She stepped onto the nearest elevator, then held the doors for a man. She saw he was wheeling a container holding a donor heart.
"I looked down and I said 'I think that's my son's heart,'" Clayborne said. "He just kind of smiled at me. Then the doors opened, and he went, fast as he could, straight into the OR. It was this incredibly surreal moment."
Building a unique support system
After the delivery hiccup, Micah's heart transplant went smoothly. About nine months after the surgery, Micah, now 14, is doing well. He's back in school and receiving regular follow-up care — and focusing on a new passion project.
While Micah was awaiting transplant, he had realized how few resources there were for teenagers in his circumstances. There were support groups for parents. There were playgroups for younger kids. Clayborne even asked hospital staff if there were virtual meetings he could join.
"I felt really bad going back in and saying 'Micah, there is no support for you,'" Clayborne said. "And his response was 'I guess we gotta make one.'"
In January 2025, Micah and Clayborne launched Transplant Teenz, a virtual community aimed at connecting teenagers nationwide while they wait for organ transplants. The non-profit group hosts group meetings and online events and shares educational materials. Dozens have already joined. Micah said he hopes to have 100 participants by the end of the year.
"Being a teenager is when you're starting to become an adult, and things become more stressful," Micah said. "Transplant just makes everything more stressful without a support group around you. My hope is to give teens a group they can go to that I had never had."