This little boy’s skin falls away even at the slightest touch. Read his painful story
3 The World Needs To Wake Up To the Butterfly Children
Jonathan and children like him are called the ‘butterfly children,’ because of the fragile skin. What’s worse is that there is no cure. Jonathan says that he feels pain every day, even when he is sleeping.
He says, “I have that little part of me that’s conscious when I sleep and sometimes I wake up because it hurts so badly.”This butterfly child is really under great amount of pain, but there is alesson to be learned from Jonathan. Despite of his ordeal, this little boy is actually an ambassador for a charity called DEBRA which seeks to raise awareness of EB. He has been across the country speaking on behalf of the charity raising over $100,000 towards research for a cure.