John Hudson Dilgen is a wonderful boy who was born with a rare, genetic skin disease called Recessive Dystrophic Epidermolysis Bullosa (referred to as “EB”).
Recessive Dystrophic Epidermolysis Bullosa (RDEB) is one of the more severe forms of EB. It is characterized by loss of fingernails and toenails, anemia, failure to thrive, and difficulty eating and swallowing. Blisters also affect the eyes, mouth, esophagus, as well as the internal organs. Most children with John Hudson’s severe form of EB eventually succumb to anemia, failure to thrive, chronic infection and/or squamous cell carcinoma. We are hoping to change this future for John Hudson and his friends. There is no cure for EB (yet!), only daily extensive bandaging, medication, and specialized medical and nursing care.
John Hudson is asking to be included in the experimental procedures that are happening at University of Minnesota and Stanford and with Scioderm, who is pioneering an alternative treatment that started January 2013. His next trip may be to Minnesota to meet with the Doctors there to determine if he is a candidate for a bone marrow transplant.
We will continue to search out possible answers with Minnesota and Scioderm, support research via the Jackson Gabriel Silver Foundation (www.JGSF.org) and pray that a cure is in the very near future!