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My soloution, no more kids. I then married a divorcee with kids. Love them dearly, excited about getting grandkids (probably ten years or so away)
Luckily, to get what I have, you need to have parents with the same faulty gene, my daughter hasn't inherited it, it stops dead with me.
We think we understand genetics, but we don't. Not fully. Scientists used to think the genes were all important, but it appears the spaces between the gene also has a huge impact, and that's not even close to being understood.
It appears to have had a positive outcome, which is great, fantastic. Nobody wants children to suffer, but we need more data. My concern is that this is being messaged by some of the media almost as a lifestyle choice. That worries me, particularly when we don't fully understand the long term effect, and how this may/may-not impact later generations.
Hooefully, it's 100% safe.