Imagine skin so delicate it blisters or rips with the slightest friction. Imagine this happening all over your body including inside your mouth, down your throat, on your eyeballs, everywhere, every day. Imagine having burn wound dressings covering your body head to toe every day of your life. Imagine these dressings needing to be changed and every time they are how painful it would be. Imagine doctors visits to dermatologists, gastroenterologist, orthopedic surgeons, general surgeons, hematologists, dentists, physical therapists, naturopaths, nutritionists. Imagine all the surgeries to open your scarred and constricted esophagus, surgery to place a G-tube to force more calories in your tiny frail body, tooth extractions and cleaning under anesthesia. Imagine hand surgery to separate and straighten your fingers that have fused together into a mitten. Imagine blood draws, iron infusions, blood transfusions which are so stressful they cause panic attacks. Imagine this is not just a phase you go through in your life…. but your life.
Hailey was born with a rare genetic disease called Epidermolysis Bullosa. Those suffering with this condition are called “butterfly children” because their skin is as delicate as a butterfly’s wing.
This is the worst disease you’ve never heard of. EB is a painful, mutilating, disfiguring and debilitating disease.