
This is Sammy practicing his golf swing back in early April.
There has been a huge development at the University of Minnesota on EB research! This case specifically deals with RDEB, the type of EB that Sammy has- Recessive Dystrophic (Epidermolysis Bullosa.) It's weird. After a couple years of dealing with this situation the act of saying the full words for RDEB is like saying "middle linebacker", it just rolls off the tongue as a series of syllables with no unusual meaning. In reality RDEB carries serious consequences with it which I won't go into right now. You can check out more info on EB at
http://www.debra.org and here is the link to the University of Minnesota article on a stem cell (from cord blood & bone marrow) transplant case that appears to have corrected the collagen deficiency in the skin-
http://www.ahc.umn.edu/news/releases/eb/index.htmI will post more updates as available on this type of research.