“They said my son would die before he turned 15”... Kwon Oh-joong’s words he couldn’t bring himself to tell his wife

[Financial News] Actor Kwon Oh-joong has shared how he heard from doctors that his son, who has a rare disease, could die before the age of 15, but did not tell his wife. His wife, it has emerged, heard the same thing and kept it from her husband as well.
Kwon recently appeared on the YouTube channel “Sebasi 15,” where he spoke about his son’s illness and the things he and his wife hid from each other at the time.
Kwon said he had spent more than 20 years visiting various hospitals to find out his son’s exact diagnosis. During that time, doctors told him his son could die before the age of 15, but he said he kept the news from his wife because he was afraid it would shock her.
He recalled what happened at the time: “As I was being discharged, the doctor called only me over. Based on the test results, he said it was probably a type of muscle disease and that the child could die before turning 15. It was such a shock. What was I supposed to do? I couldn’t let my wife know. Wouldn’t it be so hard to bear until he turned 15? So I decided I had to keep it a secret and went out into the hallway, but my wife asked me about it. So I told her the doctor had said, ‘Congratulations, raise him well,’ and came home.”
After hearing what the doctors said, Kwon began checking every morning whether his son was alive. He said he would secretly go into the room and listen to his son breathing so his wife wouldn’t notice, and that he kept doing this until his son turned 15.
Kwon said, “From the next day on, it was so hard for me. When I woke up in the morning, I’d pretend to go to the bathroom so my wife wouldn’t notice, then go into the room and put my ear near the child to see if he was breathing. That became my daily routine. It went on until he turned 15.”
He added, “After our son’s birthday, my wife brought it up first. She said, ‘Actually, when we were being discharged, I heard from the doctor that he would die before 3 p.m. That doctor had told both me and my wife.’”
His wife had also kept the same news from him because she was worried he would be distressed. The couple said they did not reveal to each other that they had heard what the doctors said until after their son turned 15.
Kwon said, “My wife kept it from me because she thought that if I knew, it would interfere with my work and be hard on me. You know how, the moment you find out, this person’s life could fall apart? I knew how hard those years would be, so I felt I had to bear it alone. On the birthday, I said things like, ‘You must have had such a hard time.’”
Kwon’s son has a rare disease that reportedly affects only 15 people worldwide. Kwon said he did not learn about his son’s condition until 2017.
He explained that it is a condition involving abnormalities in the mitochondria, saying, “There is no disease name. They call it MICU1, but that isn’t a disease name; it’s one of the chromosome symbols.”


[email protected] Han Seung-gon Reporter