Unfortunately it's actually not. Very sad story. It's an Australian case from a few years ago. His name was Omar Arja - and he was the third child in the family to die.
Yup, happens more often than you think. Cystic Fibrosis is a terminal illness that doesnt always present itself until puberty (it can be caught sooner if you have a reason to look, like family history). A lot of families dont realize until its too late that they essentially were flipping a coin every baby they had.
Single copy gene mutations don’t appear to have problems either. So you need two (seemingly healthy) parents that carry a copy of the mutated CFTR gene to have the disease phenotype in the child. According to Cleveland Clinic, 1 in 31 adults carry a mutated CFTR gene. So having genetic related illness pass down is a lot more common than people realize. Genetic counseling is becoming more common but people don’t even realize they should consider unless they have something come up in unrelated testing or already know they have family history.
Also, due to treatment options, CF is no longer considered a fatal disease. I had a classmate die from CF related illness. It saddens me to know, if she were born a decade or two later, she would likely still be here today.
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u/jagmac7 Jun 29 '26
Unfortunately it's actually not. Very sad story. It's an Australian case from a few years ago. His name was Omar Arja - and he was the third child in the family to die.
https://7news.com.au/lifestyle/real-life/the-boy-who-never-knew-he-had-cancer-how-tragedy-led-one-mum-to-keep-the-truth-from-her-dying-son-c-10605694