Kylie's Kids: 2-Year-Old Elisa Battling Rare Skin Condition
MINNEAPOLIS (WCCO) -- There is only one place in the world treating a rare skin condition known as epidermolysis bullosa, or EB, and that's right here in Minneapolis.
The University of Minnesota Masonic Children's Hospital is doing bone marrow transplants to help children whose skin isn't attached to their bodies. They live with painful blisters all over their skin.
Two-year-old Elisa came here from Italy to receive the transplant. She's this week's Kylies Kid.
It seems like throwing a ball is something so simple, but for Elisa, the ability to do so is a whole new world.
"She can do many things that she couldn't do before, like grabbing this ball," Elisa's mother said.
Elisa and her family moved here from Italy just to come to the University of Minnesota.
"Since Minneapolis is the only place in the world they're doing this experimental treatment, we decide to move her," she said.
Elisa received a bone marrow transplant from her sister last year.
"She wouldn't have been here if it wasn't for the transplant," her mother said. "She now has a better and longer [life] that she didn't have before."
Before the transplant, Elisa's condition was so severe the blisters were in her esophagus. Her family lived in constant fear she would suffocate.
"She slept with us in the bed with me holding her so if she would jolt she would suffocate," her mother said. "I would wake up because you don't make any sounds when you suffocate."
Now the worries are a little more normal for a 2-year-old. But she still has a long way to go.
"We're still scared that she will get hurt, because she could still get hurt," her mother said.
For now Elisa's enjoying the little things she couldn't before, like stickers, until a cure finally comes.
"We're hopeful and waiting," her mother said. "She's got more time now to wait."
