Child With Rare Affliction Has Stem Cell Transplant

By Liz Collin, WCCO-TV

MINNEAPOLIS (WCCO) — There are kids that live every day with unimaginable pain. It is a rare disease that tears their skin, just through touch.

Nick Moore, of Oskaloosa, Iowa, is one of a dozen with the disease that has found hope at the University of Minnesota’s Amplatz Children’s Hospital.

While Nick has spent the last five months in a hospital room, it is nothing compared to the pain he has lived with his whole life. He was born with a rare genetic skin disease called Epidermolysis Bullosa, or EB. His skin doesn’t stick to his body. Hours are spent each day wrapping his body in bandages.

“It’s been a long hard road, hasn’t it Nicholas?” His mom, Elizabeth Moore said.

Nick is now 10 years old, but looks much younger. Blistering in his mouth makes it hard to eat and grow like other boys his age.

For the last five years, Dr. Jakub Tolar has helped kids like Nick live better lives. Twelve children have survived breakthrough stem cell transplants, and the research will help others recover from burns.

“This is the essence of medicine decrease suffering that’s what we are doing,” Tolar said.

Nick had a transplant in March. His 12-year-old brother Jack donated the bone marrow. As Nick’s new skin grows, there are changes every day.

“My hands used to be wrinkly and stuff and now they’re smooth,” Nick said.

Nick will likely spend a couple of more months in the hospital, a brave boy who now shares a lesson no child should have to learn.

“Complaining doesn’t help with pain, so might as well not complain,” he said.

The stem cell transplant is not considered a cure; it will only help ease the pain. But Tolar hopes the University of Minnesota’s research could lead to a cure.

Right now, more than half of EB patients will die by the age of 15, and the rest will lose their battle as young adults.

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