Rafaella Kopelan, 6 years old, living in Manhattan, New York, USA can still ride a bike, play swing, but all those activities must be very careful because her skin can tear any when.
Rafaella suffers from a genetic condition called “epidermis”. This disease causes Rafaella’s skin to blister continuously and her fingers also stick. For people with epidermolysis bullosa, even the slightest movement causes them pain. Symptoms include blisters in the mouth, thickening of the skin and fingers, fingers sticking together, and even blistering of the esophagus.
This genetic disease cannot be cured and it takes her parents more than 90 minutes a day, starting at 5:15 am, to change her bandages. Parents also had to bathe her and apply a special cream to Rafaella’s skin. All Rafi’s wounds must also be carefully cleaned and bandaged to prevent infection.
Despite having a strange disease, Rafaella did not succumb to the disease. I even donated $600,000 to charity. Her father, Brett, is currently the CEO of a charity called: The Association for Research on the Harms of Epidermolysis.
Brett recalls: “When Rafaella was first born, she had no skin on the backs of one arm and both legs. The hospital didn’t know what had happened either, and just six hours later, the skin began to peel off.
For two years, Rafaella’s whole family had to rent a house in Minnesota to give her a stem cell transplant, something that had only been done with seven children before. Despite the dangers, Rafaella’s body gave positive signals, starting with its own production of protein. However, Rafaella’s body may not be able to produce enough protein.
