Monday, October 25, 2010

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 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 Bella - I didn't know her but I followed her through her EB journey and all the EB babies have such a special place in my heart. Many kids do not live very long and if they do they are in constant pain. We need help to find a cure. I am collecting donations to do to for more research to be done for EB. So if you would like to donate please leave me a comment or email me please. Any little bit will help.



This Friday I will have the pleasure of meeting Bella's parents and sister Ali; and little Jonah and his mom and dad. Their is an EB gathering in Winston Salem, NC and I feel very blessed to be able to go. These children are beautiful and have amazing families!!!! They have brought a great appreciation to me of the simple things in life and have helped me to put a lot of things into perspective that wouldn't be otherwise. Please help support research to find a cure for EB.