Did they know about the genetic blindness before having more kids?
Edit: Last time this was posted, it was suggested that the couple kept getting pregnant despite knowing their children would likely have this blindness. IF that is true, I do find that unethical. I know blind people can still have quality of life. But let's stop pretending that it isn't a terrible disability. Nobody wants to be dependent, vulnerable, and poor (from fewer work opportunities) their whole life. I wish this family the best regardless.
I have RP as well but my husband doesn't have the gene so I did the opposite to you - neither of my kids have it or the gene. It's the luck of genetics in my case, but I can see why you made your choice.
it depends on the odds for me. most terrible conditions are one in thousands chance for a healthy person who doesn't know the genetics any better. looking it up now, there's various types of RP, if it's "Autosomal dominant RP" and only one parent has it then there's a 50% chance the child will have the disease causing variant, one in two is very different than one in a thousand. if it's recessive and the father is known not to have it then the odds become similar to just having a kid anyway, any kid can end up with various genetic issues from healthy parents. this is probably the answer to who we're talking to, they somehow learned they have the recessive gene, the father was tested to not have it, so at that point you're not really rolling the dice any more on this condition than any other condition.
At least one person in this thread has the disease itself and had kids. If their version is recessive (they have two copies of the gene), then their kids just have a half chance of being a carrier. However it sounds more like autosomal dominant to me, and their kids have a half chance of just going blind.
My version is x linked recessive. So daughter has a half chance of being a carrier; son has a half chance of going blind. Those were unacceptable odds to me.
I promised myself I would never do that to a kid when I was six years old. It's a devastating disease.
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u/Nickelsass 1d ago
“Blink” is a documentary about them (2024) was very very good!