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Anton, his sister Vivian, mom Jacki and dad Jesse celebrating his 6th Heartiversary in January 2026 (left) and Anton and his sister at her high school graduation in May 2026 (right)
We didn’t know our son Anton was ill until he needed baseline labs. His liver and kidney enzymes came back ten times higher than normal, and those results led us to every test under the sun to find out why. Eventually, we learned it was Danon disease.
Anton’s birth mother also had Danon disease. She was born in South Korea, adopted as an infant, and raised in Minnesota. Nothing is known of her first family. Sadly, she chose not to seek a doctor’s care and passed away from Danon in 2022 at the age of 42.
Anton received a heart transplant on January 29, 2020 at the age of 14. Up until a couple of months ago, he was bowling, biking, and active. Lately, he’s on the couch more. A week ago, his legs gave out on him. It wasn’t lightheadedness; they just wouldn’t support him. He rested, then got up as if nothing had happened. He also rides for miles around town using his recumbent bicycle. There’s a power assist but only used for the big hills.
Anton at the bowling alley. He bowls a strike!
Then there’s the ten-pound lifting limit. We were told that lifting more than ten pounds will advance his Danon disease. Stairs, groceries, bowling balls: Anton completely dismisses this limit. If he can, he will.
“As his mother, this brings me great anxiety. My greatest challenge is trying to understand his dwindling power over his body while showing him empathy and compassion, because I sense that following doctors’ orders will allow our sweet boy to be with us longer.”
Cognitively, his memory is declining, too. Finding his words and making sense on the first, second, or third try of communicating has become a challenge. What a complex disease Danon is.
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