I'm having a hard time with the Havyn posts. I'm not seeing lolcow material. Parents seem to have done things correctly, didn't cause this kid's issues, didn't know about being gene carriers, are following treatment plans, aren't really posting any more than other special needs parents and don't seem in denial at all. Well, maybe wrt the glasses. She's only 2, the things being worked on in OT & PT are appropriate for her condition. (PL that I haven't really shared here before, but I was a pediatric OT in my working life) Info on ALG-1 looks like it may be fatal within childhood, but that doesn't mean that you don't treat or provide therapies. She at least shows some awareness and small voluntary movements unlike Luna, or the goblins, or shit, what's thanatropic dwarfism baby's name. Yeah, she's not pleasant to look at, but meh, just a spud look, not "grotesque" as you called her. I guess I just don't see the obnoxiousness in this family like our others.