Discussion - Emery-Dreifuss Muscular Dystrophy

Hey there!  Anyone out there with this diagnosis?  My daughter is 7 and was diagnosed at age 5, although symptoms began at age 2.  She is beautiful and smart.  We have so many issues.  She now barely walks so she's getting a wheelchair soon.  She is very thin.  If there is anyone out there who can relate and would like to discuss these and other issues, I'd love to hear from you.  We live in Hawaii and feel so alone sometimes.  Aloha!