But Bastian has a secret: Since birth, he has suffered from a very rare skin disorder that makes him exceptionally prone to injury. His life is riddled with pain and rejection; his thoughts are dominated by self-doubt and mistrust.
Julie wants to help him shake loose his inhibitions and open up to her, but can she reach deep enough to truly understand his suffering?
Inspired by her real-life love for a “Butterfly Child” and moved by the reactions of other people, Greta Milán wanted to find an unconventional way to raise awareness of the rare hereditary skin disorder epidermolysis bullosa. In her debut novel, Julie’s Butterfly, she deals with prejudice, describes the experience of EB sufferers, and gives rich and varied insight into life with EB. Greta Milán is married and lives near Frankfurt, Germany.
Knowing that Julie’s Butterfly is influenced by real people and the struggles that they experience makes a touching story even more heart-breaking. I’ll admit that I’m not always the most tactful of people. When you see someone who obviously is dealing with some physical … imperfection seems an awfully harsh word but I don’t know what else to use … sometimes you have no idea how to react. You don’t want to stare but you don’t want to turn away either and even at my age I haven’t always figured out the appropriate middle ground. And this book just reinforced for me how people can be cruel, sometimes without even realizing it.
Bastian is extremely sensitive about his condition and some very bad early experiences have shaped the way he deals with it. Meeting Julie though shakes up his world. He’s reserved, difficult, emotional, and very proud. He’s also very self-conscious about anyone seeing his body and his heart. Julie sees the man inside and is intrigued by him but she’s going to have a very long battle in front of her to break thru his walls.
It’s a very sweet and poignant journey for them, one that I took with my heart in my throat and sometimes tears in my eyes. It definitely wasn’t easy but the ending totally made every difficult step worthwhile.