This boy is so inspirational. I cried when I saw this video and what he goes through on a daily basis. He is so strong and so worldly. He is a great ambassador for butterfly children and more people need to hear about him, and about this horrifying illness..
My son Nicky has the same form of EB as Jonathan, He's on morphine 3 times a day. I just published a book about his life... https://www.facebook.com/butterflychildbook