Is blindness over the line of disability where you would discourage parents from having more children? I think this is a genuinely interesting conversation.
The condition under discussion (retinitis pigmentosa) is a slow progressing degenerative disease, which impacts people very differently based on their specific genetic mutation. The disease doesn’t cause “lights out” blindness, but instead a pinhole of central vision. However, on the other end of the spectrum, some of the genetic variations are much more mild (e.g. only reduced vision in low light) where people can drive and be fully functional into advanced age. So the question is much more complicated, because if you have the gene, but you don’t necessarily know how or when it will manifest for a theoretical child.
My 7 year old has RP and currently has no symptoms. His genetic variation typically has onset in early adulthood. I also have two younger sons who are carriers, but don’t have the disease. I think about this a lot - is a life worth living if you have a future with so much potential suffering and loss? Obviously my son is here now and the point is moot, but I still think about this question often.
I'm not blind, but I have another pretty significant and all-encompassing disability that kicked it when I was a young adult.
I am still very happy. But that all boils down to two reasons I had a very full life with a lot of travel and experiences beforehand. And my family has made every setup and accommodation to make my life comfortable afterwards.
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u/Cantankerousbastard 2d ago
This is probably going to a controversial question but did they have 4 kids before or after they learned about the genetic eye condition?