B”h no personal experience, but have some knowledge of genetics and a quick read of Tay Sachs websites filled in the missing blanks for me.
Your story brings up several interesting points that people might want to think about, I’m curious how people feel.
1. Had this boy’s parents been tested and their mutation carrier status identified, they presumably would not have married and this boy would not have been born. But he has lived 20 something healthy, productive years, presumably bringing his family nachas, doing mitzvos, learning Torah. Should all of that not have happened? Reminds me of Miriam’s protest on Amram’s divorcing Yocheved…
2. From what I read, LOTS is very variable- from mild symptoms to severe degeneration, both physical and mental, at different ages. This is similar to cystic fibrosis (also tested by Dor yeshurin)- there is a range of age of onset and disease severity. In some cases, it can be a disease that one can live with, although obviously it’s not at all pleasant. It is arguably different from the infant form of Tay Sachs that is always fatal at young ages. Yet, as far as testing and negating a potential shidduch, these are treated the same. Is that right?
3. Even with Dor Yeshurin, there is no way to guarantee a healthy spouse or healthy children. There are so many more diseases out there. Has the concept of genetic testing contributed to a feeling that we can control this, as suggested by the obvious hurt/pain expressed by AWOB when the testing of the dating couple failed to reveal a serious illness?
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