SUN PRAIRIE, Wis. - Like most kids his age, 12-year-old Eleafar Xelhua Romero can't wait to spend time outside during summer. However, unlike his peers, he's been confined in years past to his couch because the agony of moving was too great.
He suffers from epidermolysis bullosa or EB, a condition afflicting roughly 30,000 Americans. The genetic disorder led to his skin painfully cracking, blistering and shedding at even the slightest of touches.
"Most of the time, I needed to stay in," Eleafar said. "I couldn't go outside or anything."
That is until he underwent a cutting-edge bone marrow transplant at the University of Minnesota Amplatz Children's Hospital nearly a year ago. The procedure injected bone marrow from his older sister, Lizzeth, into Eleafar in an effort to help him grow new skin. While he still has pain and is currently confined to a wheelchair, he says his future is full of trips to the park with his younger brother and cousins thanks to Lizzeth.
"She's the reason I'm having a better life," Eleafar said during a recent trip to a Sun Prairie park. "She's the one that gave me the opportunity."
Lizzeth paused, struggling to find the proper response to her brother's comments.
"He's my brother, so he's really special," Lizzeth said. "It was special to know that there was an opportunity for him to get better."
His doctors in Minnesota will be examining him next month, but say his chances of dying as a result of transplant have decreased significantly.
"The most dramatic change (in kids like Eleafar) isn't just the skin," said Dr. Jakub Tolar, Eleafar's physician. "Rather it's the change in mindset and outlook on life, from possible depression to one of hope."
Eleafar and his family are certainly hopeful. While his mother still washes him in bleach to prevent infections, she believes Eleafar's future is positive.
"I think in the future he'll have normal skin, no pain," Eleafar's mother said. "The big change is he doesn't have any more pain when he takes a shower. Before the transplant, he was screaming all the time. It's very hard for me to see the screaming and crying and I can't do anything. Now, he's enjoying (his shower) and it's very nice."
But not as nice as being able to do what so many other kids his age can do: go to the park.
"It has been OK after the transplant," Eleafar said while watching his little brother play on the jungle gym. "There are a lot of things I can do that I couldn't do last year.
"(The best is) I like to stay outside and breathe the fresh air."
For more information on the University of Minnesota program that helped Eleafar, click here.
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