Your Healthy Family

Mar 13, 2013 10:36 AM by Marissa Torres

Boy battles skin shedding disease

A 12-year-old Wisconsin boy is battling a painful disease no child should have to face, his skin just peels off his body. Now there's a doctor giving the boy and his family new hope.

Physical therapy is hard when you're Eleafar Xelhua and you were born with a condition that inhibits skin from attaching to your body.

His has been a life filled with bandages, bleach baths and blisters. But most painful: skin so fragile it would peel off if his mother hugged him.

"All she could do was lay with me and say sorry," says Eleafar.

He and his family were desperate when they arrived from Madison, Wisconsin.

Dr. Jakub Tolar and the U of M's Amplatz Children's Hospital has given them hope.

Last august Eleafar was infused with bone marrow from his sister -- a restart for patients with his rare condition, developed by Dr.Tolar.

"There are more than two dozen now transplanted and we have seen in about 3/4 of these significant improvement," Dr. Tolar.

Before transplants, most patients with Epidermolysis Bullosa did not live past their teens. But Eleafar's skin has begun to regenerate.

"We are so excited to see these change and we have a hope together a better life," says Margarita Romaro, Eleafar's mother.

A mother can again hold hands with her son -- and after eight months in Minneapolis -- Eleafar will soon be home with family and friends.

"They will want to join me instead of getting away."

 

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