Boy with rare disease undergoes breakthrough treatment
SUN PRAIRIE, Wis. — A Sun Prairie boy suffering from a rare and painful skin disease is undergoing breakthrough treatment in Minneapolis, in hopes of finding a new life.
One in half a million are born with epidermolysis bullosa, or EB, but the potential path to freedom from a lifetime of pain may be just across state lines.
“Alright, ready?” asked physical therapist Kate Ward, helping a patient onto a special needs bicycle. “Do you want a little help getting on?”
On a path primed for wheelies, Eleafar Xelhua-Romero’s greatest trick may simply be hanging on.
“Just imagine the last time you had a burn,” said Dr. Jakub Tolar with the University of Minnesota Amplatz Children’s Hospital Department Of Pediatrics. “Just a small burn on your finger. It bothered you for a week, right? These kids live in a phenomenally larger pain all the time.”
“Children that are born with this disease, they know on the first day of their lives because their skin peels off,” said Tolar.
The genetic disease leaves Eleafar’s skin so fragile, it’s likely to break and blister at the slightest touch.
“With his fingers and how sensitive they are, and he doesn’t have any fingernails, opening a pop tab was a big challenge,” said occupational therapist Abbey Davison.
“I usually don’t have nails and enough strength.” said Eleafar, laboring his way opening the pop can with a small tool. “I can handle the pain.”
Very few have walked in the 11-year-old’s shoes. Of those who have, even fewer grow old enough to fit in them.
The chance at new life is prompting Eleafar and his mother to hang on to hope at University of Minnesota Amplatz Children’s Hospital.
“What happens with my son in the future?” asked Eleafar’s mother Margarita Romero. “If he stays in the same condition with a lot of pain, I don’t want this life for my son.”
Romero says it’s been a life spent bathing her son in bleach each day, then wrapping him in bandages from head to toe.
“You need to do, or your son will get infections,” said Romero.
“So she’s the one that helped me with everything,” said Eleafar, holding back tears, “And I thank her for that.”
As a mother’s love mends the pain inside, Dr. Tolar hopes to redefine Eleafar’s exterior expression.Boy with rare disease undergoes breakthrough treatment
“Part of what we’re doing is we are trying to restore the skin to its original state,” said Tolar. “A healthy state, so that he can have what we all take for granted.”
“To have the skin I’ve always wanted to have,” said Eleafar.
Dr. Tolar’s team discovered stem cells from bone marrow transplants could heal wounds and regenerate skin in EB patients. Eleafar is one of two dozen who have received a transplant through an Amplatz clinical trial with marrow from his older sister Llizzeth. In the weeks following his August procedure, doctors noticed an immediate improvement.
“He is a unique child,” said Tolar. “He has really been extremely brave in taking this enormous amount of pain and suffering with grace with the ability to see something better.”
“My skin feels better,” said Eleafar finally riding his bike through the hospital hallways. “I’m feeling stronger.”
Will the destination be worth the trip? Every day, Eleafar grows more familiar with his new skin. But to be comfortable in one’s own soul means enjoying the ride wherever the long road goes.
Eleafar and his mother are staying in Minneapolis through the Ronald McDonald House as doctors continue to monitor his progress. They hope to be back in the Madison area with their family in time for Christmas.
If you’d like to find out more about Dr. Tolar’s research on EB or donate to the cause, you find information at the Pioneering Unique Cures for Kids website.