When Dr. When Britney Cleborn’s 13 -year -old son Micah came home from school in December 2023, he asked him if he wanted to play football outside. This was one of his favorite hobbies. But Micah said that he cannot do.
“He said,” My chest hurts, “Claborn remembered. “I was so, ‘What do you mean that your chest hurts?” ,
The words were terrible to Claborn, which had a long history of cardiovascular issues. She gave birth to Micah in 2010. He was born prematurely in 34 weeks, and during delivery, Claborn suffered a heart attack. He spent weeks in cardiac intensive care units and diagnosed peripartum cardiomyopathy, a rare form of heart failure that occurs at the end of pregnancy or immediately after giving birth. During Micah’s childhood, her heart continued to weaken. He had a pacemaker and defibrilater that was implanted to maintain the rhythm of his heart, and a mechanical LVAD pump to help disseminate his heart. In 2018, he had a heart transplant.
Due to the history of Claborn, Micah had seen a cardiologist regularly as a child. There was never any problem. But Cleborn knew that chest pain could be a warning indication, and he brought it to a cardiologist at 10:30 am the next day. Till 11:15 am, Micah was admitted to the Cardiac ICU at the children’s medical center Dallas.
The Test found that Micah’s heart was working on just 7% and he was “suddenly very close to the heart of the heart,” Cleborn said. As his mother was with, Micah needed a pacemaker and a defibrilater. It will eventually require a transplant.
Britney Cleborn 
“When they tell you that you are going to die, you are like, ‘Okay, I can fight this,” but when they tell you that your child is about to die, it’s a separate set of emotions. Not only you are helpless, you are disappointed, “Claborn said. “And as a person, who has gone through it, knowing what his future looks like, knowing the surgery that is coming, it is incredibly difficult to know what is the surgery coming and recovery from those people. It was disastrous.”
An incredibly rare diagnosis
The doctors tested Micah as to see why a healthy teenager would have such serious heart problems. They found that he had Danon disease, a rare genetic condition that affects only 300 families worldwide. Further testing found that there was also a condition in Claborn. The only documented African-American patients with cleborn disease are.
Mutation due to Lamp2 genes, due to Danon’s disease, Dr. Dr. Langon’s Hezenfeld Children Hospital, Medical Director of Pediatric Cardioed Failure and Transplant Program. Rakesh Singh said. The gene creates a protein that relieves excess waste in the cells of the body. Mutation disrupts that process. Singh said that the inability to get rid of cellular waste thickens the heart muscle, making the organs less efficiently and creates a form of heart failure that “does not react well to drugs,” Singh said.
Singh explained, “This is not uncommon for these children to require a heart transplant in their 20s.” Danon disease patients may also have neurological issues or eye problems.
Britney Cleborn 
Singh said that the disease is more common in male patients than women. Male patients are more likely to have serious illness.
A long -awaited transplant
After transplanting the pacemaker and the defibrilater near Micah, it was placed in the national waiting list for heart transplants. In October 2024, Claborn received the call he was waiting for. Micah was playing video games when she informed her.
Micah said, “I” yes, that’s it, I get a second chance. “
The family went back to the Children’s Medical Center Dallas. As Micah performed surgery, Claborn walked nervous. She only got more nervous when she received an update from the transplantation team: Micah’s heart was removed, but the new donor heart was still several minutes away.
“I am coming out in my brain. I got out of the waiting room, and I was so, ‘I just have to go for a walk.” I was not going anywhere specific, “Cleborn remembered.
He stepped on the nearest lift, then placed doors for a man. He saw a donor holding a container holding a donor heart.
“I looked down and I said” I think my son’s heart is, “Claborn said. “He just smiled at me. Then the doors opened, and he went fast, as he could do straight or straight. It was an incredibly real moment.”
Britney Cleborn 
Building a unique support system
After the delivery hiccup, Micah’s heart transplant went smoothly. About nine months after surgery, Micah, now 14, is doing well. He is back to school and is receiving regular follow-up care-and focusing on a new passion project.
While Micah was waiting for transplantation, he felt how many resources were there for teenagers under his circumstances. There were support groups for parents. There were playgrots for young children. Cleborn also asked the hospital staff whether he could attend the virtual meeting.
Cleborn said, “I really felt bad and said ‘Micah, there is no support for you.” “And his response was” I think we make one. ”
In January 2025, Micah and Cleborn launched transplant teenage, a virtual community aimed at connecting teenagers nationwide, while they wait for limb transplants. Non-profit group hosts group meetings and online programs and shares educational materials. Dozens have already joined. Micah said that he expects 100 participants by the end of the year.
Micah said, “As a teenager, when you are starting to become an adult, and things become more stressful,” Micah said. “The transplant makes everything more stressful just without a support group near you.
