Hello @scaredmomma and welcome to Mayo Clinic Connect. I am so sorry to hear about your daughter's worsening symptoms, and I certainly understand you are scared.

I am glad to see that @helena49 has already connected with you to share a bit about her experience.

Since you mentioned your interest in coming to Mayo Clinic, I want to share this link to request and appointment. They will review your daughter's medical records and history, and discuss with you treatment options.
http://mayocl.in/1mtmR63
How soon were you hoping to have her seen and are you still in touch with your current doctor on her declining health?