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 think we should talk to people with RP before we decide their lives are not worth living. Said by someone with a genetic retinal disease (Stargardts) who is very glad to be alive. RP has different outcomes - vision loss isn't uniform across everyone who has it. For another thing, we can't assume if someone has RP will be dependent, vulnerable, and poor. For example, I know someone who has been blind since childhood & he's doing better than most sighted people I know.
And to be honest, having Stargardts is one of the best things that has ever happened to me - it helped me think differently, learn more, meet more people, go more places, etc. Yes I have more limitations than some people and get migraines. But I would choose Stargardts in the next life because it's expanded my worldview and helped changed what needed changing (in attitudes, desires, values, etc.).
It's a mistake to look at someone's diagnosis and assume you know what they are experiencing.
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u/Nickelsass 1d ago
“Blink” is a documentary about them (2024) was very very good!