UPDATE:  Cadie went to Mayo clinic   at the end of march and all i can say is "be careful what you wish for because you might just get it." She went through a battering of tests and procedures. She was so brave and strong through all of them.  What they found is that her rare disorder is triggered by another rare disorder. The endoscopy and biopsy showed she has Eiosiniphiliac  Esphogeitus. It causes Cadie's entire digestive tract to swell and pucker and be covered in painful ulcer like sores. Cadie started a treatment plan and needs to be seen for further tests and a repeat endoscopy on June 20th. I come to you for help again to get her there and see this through. In this visit if treatment plan has worked she will finish up her genetics/metabolic testing and move to a ling term management plan for her life.