Welcome to Connect, @meli58.
I'd like to connect you with @nfrunner @painwarrior who live with NF-1, as well as @stephbusta and @jontan who's children have NF-1. I can only imagine how devastated and worried your daughter must be, and you, too.
I'm also going to tag @mrsjoanie @ihatediabetes @lparr00 and @fernandavidigal on your message. While their children don't have neurofibromatosis, they know first hand what it is like to parent children with rare conditions.

Meli, do you live close to your daughter?