My friend who is like my second mom has found out she has Harlequin Syndrome- she is scared kind of in the dark and lacks internet access - I think she needs someone who is going through this to talk to and reassure her. I love her. I am far away and I also lack the knowledge to ease her mind.She is going in for a battery of tests on Friday -I am willing to give someone my personal email so I can give you her phone #- Thanks Tonia