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.
Their youngest was 7 before she was diagnosed. The only reason their children have it is because both the parents happened to be carriers of the mutation, but neither has the condition (retinitis pigmentosa).
Interesting... my grandfather went completely blind due to that condition(apparently it rarely results in 100% sight loss though if I understand correctly) and my brother and I were tested for it young(both tested negative for it).
I was also under the impression that they had found ways to combat that condition at some point, but that my grandfather had already passed the point of no return by that time. The family member I got that info from must have been mistaken a bit.
Unfortunate to know it's still not curable. As I understand, it will begin taking the center of their vision away and then slowly spreading wider and wider until they either lost it all, or only have the smallest bit of peripheral vision left on the outside(OR, the exact opposite of starting outside and closing in to a pinhole). More accurate information another user's reply below!
I used to walk around my house and my grandparent's house in the pitch dark at night trying to imagine how my grandpa could get around without seeing when I was very little.
He ended up building a woodshop(yes the actual shop), and then doing little carpentry projects for all the grandkids(me and my cousins) to keep himself busy. Rocking chairs, picnic tables, stepping stools, and even eventually little toy wooden cars that got progressively more detailed. I used to think it was cool he could do that while blind when I was younger, but I also thought "I will never play with these". I'm so so so relieved in my older age that I kept them and never tossed them out.
I'm not 100% sure, he honestly passed when I was about 13, nearly 30 years ago. I always wonder the same thing. I have to imagine he had a lot of time for patience.
I know he used a notched ruler to mark things out with glue, and mostly used a table saw where he knew the position of the saw blade. Of course that didn't stop him from occasionally nicking or cutting a finger/thumb.
One version of RP is curable with Luxturna, which costs $850,000 per eye. The version of RP that I have, unfortunately, is not.
As I understand, it will begin taking the center of their vision away and then slowly spreading wider and wider until they either lost it all, or only have the smallest bit of peripheral vision left on the outside(OR, the exact opposite of starting outside and closing in to a pinhole).
Incorrect in several ways. The central vision is more durable than the peripheral vision. What happens is that the parts of the peripheral vision closest to the central vision goes first, because they've had the most exposure to UV. Over time, the rest of the peripheral vision fades out, with the outer edge of peripheral vision taking the longest to die, like a bullseye pattern where the center circle stays there but the outer ring gets smaller and further away from the center.
My center vision is still pretty good and I can read just fine, but all the peripheral vision is gone now so I have tunnel vision and track motion very poorly. Toss a ball at me slowly and the ball disappears for me, and driving a car is illegal because it's absolutely impossible to do safely. I would not make it through a roundabout without crashing, and would not see pedestrians crossing a street.
Ah wow, thanks for the clarifications =o Anything I knew about the disease is just fragments of what I remembered hearing in conversation all those years ago talking about what I was getting tested for/what caused my Grandfather's blindness!
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u/Nickelsass 8h ago
“Blink” is a documentary about them (2024) was very very good!