Ammon was diagnosed with a genetic heart condition called CPVT at just five years old after experiencing Sudden Cardiac Arrest (SCA) while playing outside with his brother. In July of 2025, he experienced SCA yet again while at a church youth camp. His family is sharing his story to spread awareness of Sudden Cardiac Arrest – which can affect people of any age – and CPVT, a very rare condition that has profoundly impacted Ammon and his family.

Ammon’s father, Brandon, experienced seizures at a young age, but at age 12 had a syncope (fainting) episode. The school nurse checked his pulse. It was very low, and Brandon was rushed to his primary care doctor – who immediately referred him to Texas Children’s Hospital in Houston, Texas. There, Brandon was diagnosed with CPVT . At the time, he was the 65th person in the world diagnosed and living with the condition.

“In 1994, it was not known that CPVT was genetic and could be passed on to my children,” he says. In fact, Brandon was told at the time it would be extremely rare, even more rare than the condition, for him to pass it on to the next generation.

When Ammon was a baby, his father remembers that he had episodes where his heart rate was very low, too (bradycardia). His doctors didn’t think anything was wrong until he collapsed while playing outside with his brother, who had to come tell his parents that Ammon was unconscious.

Ammon was diagnosed with CPVT, a condition caused by abnormalities in the way the heart muscle cells handle calcium. This condition can run in families, and causes unstable heart rhythms – especially during stress or exercise.

“That’s when we pushed for him to be seen by an expert – an electrophysiologist – to get an answer,” says Brandon.

Ammon was diagnosed with CPVT, just like his father – a condition caused by abnormalities in the way the heart muscle cells handle calcium. This condition can run in families, and causes unstable heart rhythms – especially during stress or exercise.

After many tests and medications, Ammon’s condition stabilized for nearly ten years. This summer, he had a “breakthrough event” – a dangerous heart rhythm that can occur despite treatment.

“It took about five minutes before CPR was administered,” says Brandon. “His pulse was restored, but he remained unconscious and unable to breathe on his own.”

Ammon’s heart stopped again on the way to the hospital; he was in dangerous heart rhythms for almost ten minutes. After two days on life support, Ammon stabilized. “Miraculously, he recovered beyond anyone’s expectations,” says Brandon. “He received a device called an ICD to protect him.”

Ammon now needs a Left Cardiac Sympathetic Denervation surgery – in which the nerves on the left side of the heart are interrupted to prevent future threatening heart rhythms. Only a handful of surgeons in the U.S. are able to perform this surgery for people with rare genetic heart conditions like Ammon’s.

“We want to get him treated properly so he can live life without the fear of having another heart event.”

Ammon is a smart and passionate young man – despite the challenges he’s faced due to his heart condition. He particularly loves outer space, film, coding, and languages. “These events have really impacted his life,” says Brandon. “We want to get him treated properly so he can live life without the fear of having another heart event.”

Ammon’s family is currently running a fundraiser to help Ammon get to the Mayo Clinic for his LCSD surgery. You can can learn more here.