Rafi Kopelan is a typical 5-year-old. She's mastered Candyland. She's learning to read. Given a choice, she'd spend hours on the swings at the playground.

But unlike her classmates, Rafi's body is covered in blisters from her scalp to her feet. Her corneas are scratched. Her toes are fused together. And her esophagus is lined with so much scar tissue that she can barely swallow.

That's because Rafi was born with a rare connective tissue disorder called epidermolysis bullosa (EB). The genetic disease causes her skin to break down in response to the slightest friction. Even minor contact - the scratch of a fingernail, the tag on the back of her shirt - causes her skin to tear or to erupt in blisters, leaving 75% of her body covered in painful, open lesions.