I'm in a similar situation. I went to multiple geneticists and they said it's very rare for a child to have the disease worse than you (at least for my disease). I was against it, but my geneticist stopped me and was like "have the fucking kid." I really thought after that and realized that I don't wish I was dead or never born because of it, so I should let my kid have a chance. It's an emotional rollercoaster and the shame can be so real, but you're totally right, nobody would know how to take care of that baby better than you! If the worst happens, they would have it better off than we do because they could have early (good) treatment. Good luck!!