MINNEAPOLIS - 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.
Tolar remembers when he first saw Eleafar, who lives in Madison, Wisconsin. His body was covered with painful blisters and gaps in his skin. Several times a week his mother bathed him in bleach to prevent infections. "He'd been in pain 24-7. He couldn't eat, he couldn't walk. He was depressed to the point he would be crying if you walked by him. He basically was done."
Since the transplant last August, Eleafar has begun to replace the gaps in his skin and learn simple tasks such as opening a pop can and riding a three-wheeled bike.
"We are so excited to see these changes," said his mother, Margarita Romaro. "And we have a hope together for a better life."
Tolar says Eleafar will not be cured of EB, but its symptoms should be more manageable.
Eleafar is looking forward to returning home to family and classmates. "They will want to join me instead of getting away, now it's going to be different, everyone will be close to me," he said.
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