EB Awareness Week

This isn't a fun craft or a cute story, but I hope you will continue reading.

About two years ago I came to learn of a sweet baby boy with a very rare disease. It is called Epidermolysis Bullosa, or EB for short. It is a genetic skin disease that causes the skin to be so fragile that the slightest touch causes severe blistering inside and outside the body. 


You have probably never heard of EB because most babies who are born with it die in early infancy. For two years I have been following the life of a Mr. Baby Daylon. He was born with EB and has had a bone marrow transplant to try to cure it. He has been through some rough stuff for such a little man, but some of the worst that he goes through just comes from a lack of awareness of the disease. 


I beg, beg, beg you to go to little Daylon's blog and just read the past few entries. It will help you understand why it is so important to raise awareness about EB. Then if you want to learn more you can go to this site. It is so important to these sweet families who have to cope with this heart breaking disease that people understand or at least know about what they are going through. 


That's a lot to ask, but if you do learn a little more about EB from your readings then share some of what you know with someone so the awareness spreads. Thanks!