An estimated 15, 000 children in the United States suffer from EB, according to the Dystrophic Epidermolysis Bullosa Research Association of America.

CNN: A child's struggle inspires drive for cure

He was born with recessive dystrophic epidermolysis bullosa, a terminal genetic condition in which persistent skin problems lead to crippling deformities and, eventually, skin cancer.

CNN: A mother's plea: Heal my children's skin