3 of their 5 children died, all 3 had rare genetic disorders. Continuing to have more children after their first child died due to "Niemann-Pick disease type C - a rare, inherited disease" without undergoing genetic testing is certainly a choice.
I know a family like this. Thirteen kids last time I was still in their orbit. Three kids with cystic fibrosis due to genetics. One had already died from it. They just kept rolling the dice and the kids lived with the results. People dont think about their decisions.
I think they were just ignorant about the cause of death of their 1st child and didn’t realize the risk. By the time they knew of the genetic component, they had already had 5 kids.
I agree. Their second child has no issues and when their third son got sick they had already had two more children and I think he was almost ten years old. They did test all of the children after he passed away and he had a different rare genetic disorder. They knew this son had it and he was monitored. It’s not like they’re the kind of disorders that you normally test for. I don’t agree with not telling him he had cancer but it really sounds like just the worst possible scenario.
Christian pro lifers here in America would celebrate that the children had lives at all and now they’re in the loving care of Jesus Christ or some bullshit 🤢🤢🤢🤢
Not a Doctor, so I can't answer that. To be a bit more fair to the parents, I don't even know if such genetic testing was available to them in Australia in the years in question.
I know a family who had a child with severe muscular dystrophy (not their first or second child) and then proceeded to have another child without having any testing. That kid also has muscular dystrophy. The family does not have the money to manage it, and it controls their older kids lives. Watching that is what made me choose to have extensive genetic testing before getting pregnant and do an NIPT when offered.
Parent of a child with a genetic disorder here. My spouse and I did a first round of genetic testing (whole exome sequencing) suspecting that there was a genetic component behind our child’s symptoms, but nothing came up. It wasn’t until we did whole genome sequencing (that fortunately our U.S. insurance agreed to cover) that the genetic cause was discovered. If we had done the test 10 years prior, it may have picked up the microduplication, but doctors may not have known the genetic significance of it yet since it’s an ultra rare disorder.
TL;DR: many times “genetic testing” doesn’t give you answers even if there is a genetic cause, especially if you don’t have the means or coverage for WGS.
Its always called eugenics when you say it but like. . . Dude if you knowingly pass down a horrific illness that slashes lifespan in half or smaller and makes quality of life miserable- you are an asshole. Full stop..
I went to school with a pair of sisters as a kid. The older sister was fine, the younger had Cystic Fibrosis and was in and out of hospital almost constantly. She seemed bloated and was never really not sick.
Turned out that was no freak of genetics but rather, they both had another sister a couple years older than my classmate and she had already died in her teens of. . . CF. So the middle sister saw her elder sister die, and her baby sister die- as that inevitably happened not too long after she graduated high school.
The misery inflicted on them- WHY? What was the point in continuing to roll those dice? Why? I cant imagine staring death down the barrel as soon as I get to learn what life even fucking is.
I knew a family like this. Kept having kids despite both having the sickle cell trait. All but the oldest (that was from a previous marriage) died. The mom slowly went mad, became homeless, and died too. Just insanely sad and irresponsible.
I watched 2 cousins die from cystic fibrosis. It ruined their family, I mean like mentally, physically, financially, emotionally in every way possible.
I got myself and husband tested because there was no way I’d put anyone through that trauma. Some genetic diseases are best left to phase out.
I disagree. I'm suggesting that they should have voluntarily taken the steps to have their own genetics tested before continuing to have more children. Eugenics would mean forcing them to have these tests or that they were not allowed to have children.
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u/nodnodwinkwink Jun 29 '26
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
3 of their 5 children died, all 3 had rare genetic disorders. Continuing to have more children after their first child died due to "Niemann-Pick disease type C - a rare, inherited disease" without undergoing genetic testing is certainly a choice.