A wish comes true for 6-year-old Temecula girl at Murrieta ranch

Butterfly Kids :  When Skin Blisters Can Kill

Community rallies to help   baby Elle with rare disorder     MacieFest 2010 to aid 'butterfly' babies  

You can search for EB Clinical Trials here Info for the one at the University of Minnesota can be found here (this page is a work in ...

She has her very own web site !!  ( Facebook page too!)