MINNEAPOLIS (WCCO) — People travel to the U of M Masonic Children’s Hospital for treatment from all over the world. One of those was Kylie’s Kid Elisa, who we introduced you to last year.
She came here from Italy for a bone marrow transplant to try and treat her rare disease. It’s now been two and a half years and Elisa is considered a “major success.”
When we first met Elisa she wore bandages on her hands and feet, covering up painful blisters. This time, Elisa rode up to us on her tricycle.
“She’s wearing regular shoes, real shoes,” said Gabriella, Elisa’s mom.
It’s something so simple, but seemed nearly impossible when Elisa was born.
“She was always bandaged, she was bandaged from here (neck) to her toes,” Gabriella said.
Elisa has epidermolysis bullosa, a disease that causes extremely painful blisters all over the body and in the throat.
U of M’s Dr. Jakob Tolar called it “The Worst Disease You’ve Never Heard Of” in his Ted Talk, which featured Elisa as one of his major successes.
Up until a few years ago, the only option was to constantly wear bandages.
But the U of M was ready to try something new. So, Elisa’s family moved from Italy to Minnesota for a bone marrow transplant.
“I always believed in this treatment, but honestly it’s sort of surpassed my expectations,” Gabriella said.
Nearly three years later, Elisa’s world is completely different.
“Now she doesn’t have bandages on her elbows, she doesn’t have bandages on her knees,” said Gabriella. “Before, she was an observer, sitting with mommy always, not interacting. Now she’s jumping into things, she goes to the playground and she wants to go on the slide.”
Maybe the best part came for Elisa’s two older sisters.
“They can play more together, which before they couldn’t’ even touch her.”
The family took their first trip all-together just this summer.
“We finally had our first family trip up north,” Gabriella said. “Before they were going somewhere and me and Elisa stay here.”
While her scars are starting heal, Elisa’s now learning to actually live like a toddler.
“Now she can eat and she does sometimes, but she’s very afraid of doing that cause for her, eating was pain. Now we’ve fixed her body, now we need to fix her soul and mind,” Gabriella said.
Elisa does still blister but hasn’t had to go to the hospital since July – which is a huge improvement.
Her mom says that next they’re starting to look at options for school.