Britt Jones
When a young boy uttered three concerning words to his mother, she could never have imagined it would have led to the removal of his heart.
Dr. Brittany Clayborne's teen son Micah was an active boy, and after being born prematurely at 34 weeks gestation, he seemed to be doing well. However, a hidden disease was lurking in the background, and it was only after he explained to his mom what he was feeling that she realized that something was very wrong.
Brittany herself had a history of medical issues, having had a heart attack after delivering her son in 2010. Because of this, she spent weeks in the cardiac intensive care unit, before being diagnosed with peripartum cardiomyopathy.
According to the Cleveland Clinic, peripartum cardiomyopathy is a 'rare condition that weakens your heart muscle'. This lowers the heart’s ability to pump blood to the rest of the body, which can be life-threatening.
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Due to her own struggles, Brittany made sure to have Micah see a cardiologist during his childhood regularly, and he never had any issues.
On the other hand, Brittany had a pacemaker and defibrillator implanted, and a mechanical LVAD pump to help her heart circulate blood before having a successful heart transplant in 2018.
However, when Micah came home from school in December 2023, he explained to her that he couldn’t play football outside after she asked if he would like to do so.
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"He said, 'My chest hurts'," Brittany said, as per CBS News. "I was like, 'What do you mean your chest hurts?'"
Because of her own heart history, she took her son to a cardiologist the next day and very quickly, Micah was admitted to the cardiac ICU at Children's Medical Center in Dallas.
Soon after, a devastating diagnosis was given.
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Tests found that Micah's heart was functioning at 7 percent of what it should have been, and that he was 'very close to sudden cardiac death'.
Following in his mom’s footsteps, Micah needed a pacemaker and defibrillator, as well as a heart transplant.
"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," Brittany 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."
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After trying to find out why Micah was experiencing heart problems, it was ultimately discovered that the teen had Danon disease, a rare genetic condition that affects 300 families in the entire world.
Shockingly, tests also found that Brittany had the condition too, and both are now the only African-American cases to ever be documented.
Danton Disease is caused by mutations in the LAMP2 gene. This gene creates a protein that gets takes away excess waste in the body's cells, but the mutation interrupts the process and as the heart cannot get rid of the waste, the heart muscles thicken.
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Because the condition doesn’t respond well to medication, surgery and intervention is necessary.
Thankfully, in October 2024, Micah was given the news that he was able to undergo a heart transplant due to a donor being found.
"I was like 'Yes, this is it, I get a second chance'," Micah said.
Now aged 14, Micah is doing well, and he’s receiving regular follow-up care by doctors.