February 23rd, 2013
08:50 AM ET

A child's struggle inspires drive for cure

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.

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Filed under: Health Care
soundoff (4 Responses)
  1. little mister©

    so how is rafi supposed to have a normal life.

    February 23, 2013 at 9:51 am | Report abuse |
  2. banasy©

    Oh, this poor child!

    February 23, 2013 at 11:58 am | Report abuse |
  3. wut

    Well there goes my happiness down the toilet. Thanks CNN. What next? Smile-Train coverage? Please stop.

    February 23, 2013 at 6:42 pm | Report abuse |
  4. chrissy

    Lol @ wut, just a bundle of cheerfulness aint they?

    February 24, 2013 at 5:12 am | Report abuse |