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Boy with rare skin disease finally finds relief

5:59 PM, Mar 11, 2013   |    comments
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MINNEAPOLIS, Minnesota (KARE) -- Eleafar Xelhua arrived in Minnesota eight months ago with a goal more humble than those of most 12-year-olds. He wanted a hug from his mom.

Eleafar was born with Epidermolysis Bullosa (EB), a rare disease that inhibited his skin from attaching to his body. The condition left his skin so fragile, even a hug could pull it off.

"All she could do was lay with me and say sorry," said Eleafar with tears welling in his eyes.

That goal is now met. Hugs are again part of his life thanks to the work of Dr. Jakub Tolar of the University of Minnesota and Amplatz Children's Hospital.

Five years ago, Tolar began using bone marrow transplants to help EB patients reset the defective proteins that generate their skin. "There are more than two dozen now transplanted and we have seen in about three-quarters of these, significant improvement," Tolar said.

Before transplants, most EB patients didn't live past their teens.

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