EB awareness week!
This week is EB awareness week! EB stand for Epidermolysis Bullosa. It is a rare, genetic skin disease that involves the connective tissues of your skin. The slightest friction to the skin can cause severe blistering. The EB kids are referred to as 'Butterfly children' because their skin is so fragile. To learn more go to http://www.debra.org/ . I came across this disease through a blog about little Jonah. You can follow Jonah by clicking on his picture to the right. I have since come across several EB kids that I follow on a regular basis. EB is a horrible, painful disease. This week I will be running in a 5K race in support of EB. A few of my friends from work and myself made shirts that have the kids we follow on the back. Unfortunately shortly after the shirt was made little sweet Bella passed away. She was at the University of Minnesota for a clinical trial for an EB bone marrow transplant. I think she was patient #12. So far this is the only hope these kids have. I miss B...