Having googled this to see what it is I see that it is very, very rare so quite possibly you won't find anyone here. Have you tried looking for a support group on line? I found a marvellous one for DH's cancer on Facebook and it's been a great help being able to talk to people who understand.
I hope your grandchild is getting on all right. I think it's worse being a granny than a parent because you have to worry about the parents too.