Tripp Roth, 2, from Ponchatoula, La., died in his mother’s arms Saturday after battling junctional epidermolysis bullosa (junctional EB). Read more: http://www.foxnews.com/health/2012/01/16/louisiana-toddler-dies-after-two-year-battle-with-rare-skin-disease/?test=latestnews#ixzz1jfySQssw
It is an amazing honor to be able to work with Pioneering Unique Cures for Kids (P.U.C.K.) and to work with these beautiful children. I cannot wait to capture all of their little lights and share them and their story with you.
Blake was born in 2011 with EB Epidermolysis Bullosa an extremely rare genetic skin disorder. The cells in the skin do not work correctly and the skin is as fragile as a butterflys wings. Hence, the name "Butterfly Children". No known cure, very painful blisters that form all over the body and internally. We hope someday soon a cure is found!
Jonny Kennedy (1966-2003) He had a condition known as dystrophic epidermolysis bullosa (EB or DEB). It's an inherited connective tissue disease causing blisters in the skin and mucosal membranes. As a result the skin is extremely fragile and minor mechanical friction or trauma will separate the layers of the skin and form blisters. People with this condition have an increased risk of cancers of the skin, which is what led to Jonny's death. He had a great sense of humor, strength of spirit…