Give yourself a light scratch somewhere on your body. Now imagine if that little bit of contact caused your skin to blister severely. That would be severely debilitating, wouldn’t it? This is the reality that six-year-old Rafaella Kopelan lives with every day.
Rafaella, or Rafi, was born with Epidermolysis Bullosa, a rare genetic skin condition that causes a person’s skin to blister and tear with only minimal contact. Rafi was diagnosed with the condition just days after she was born.
"When Rafi was born she was missing skin on the back of one hand and on both feet,” father Brett Kopelan said. “The hospital didn't know what was wrong and after six hours she began to blister. The next morning when I saw her, the world fell out from beneath my feet.”
Doctors pinned down her condition as Epidermolysis Bullosa – commonly called EB – and told the Kopelans there was no cure for the ailment.
Now, six years later, Rafi and the Kopelan parents have learned to live with EB – though it’s far from easy. The Kopelan’s spend an hour and a half every morning gently bathing Rafi, replacing all of the bandages on her many wounds, and applying special creams to her skin. A stem cell therapy regiment she went through several years ago improved her condition, but only mildly.
"EB is like the feeling when you fall off a bike or scrape your leg and then get into a shower — how much it hurts when the water and soap hit it,” Brett Kopelan said. "If you imagine most of your body as an open wound — we have to hurt our daughter in order to keep her clean and safe.”
In addition to the painful tearing and blistering, EB also often causes digits to fuse together. This sad aspect of the disease affects Rafi as well, and can be seen in this picture of her hand:
Rafi does not let EB zap the fun out of her life, though. She loves riding her bike, playing on swings, and playing with the family dog. She and her parents just have to exercise caution in many ways other children and parents don't.
Watching Rafi so bravely face her disease has been a source of inspiration for her father.
"There was a time when Rafi said having EB made her unique, which was an incredibly mature thought pattern for a 5-year-old,” he said. "I couldn't be more proud — but, the truth is she hates having EB and I can't blame her.
"I keep telling her about the different medicines being developed to help her and she is excited about the possibility of beating her EB. It's not fair she has to go through everything that she does, but she handles it with a grace and courage that I know I couldn't muster.
"There is no one I admire more in this world than my daughter."