MINNEAPOLIS (WCCO) — A little boy with a rare and deadly skin disorder is getting a chance at a long life. He came to Minneapolis from Texas because of a unique procedure, pioneered here in the Twin Cities.
Anton Delgado has epidermolysis bullosa. It makes his skin so delicate that it easily blisters, or even falls off. He recently had a bone marrow transplant at the University of Minnesota Children’s Hospital to try to improve his health.
Look past Anton Delgado’s protective mask, the bandaged arms, even the blood work needed to keep him healthy, and his mother Vanessa says you will quickly see a little boy who is all about finding the joy in life.
“He’s seriously the most joyful, happy person on the face of the planet,” she said.
Maybe his happiness comes so easily because his health has not. The 5-year-old was born with a rare genetic skin disorder called epidermolysis bullosa, or EB.
“He is missing, basically, the glue that holds his skin together,” Vanessa Delgado said.
At its best, Anton’s bandages protect his skin allowing him to play like any other boy his age. At its worst, EB can take his sight.
“He gets corneal abrasions,” his mother said. “They get dry at night he’s excited to open his eyes in the morning and then they just tear, so, then he can’t open his eyes for three days. It’s heartbreaking.”
His parents, Vanessa and Jason, saw an opportunity to improve Anton’s health at the U of M Children’s hospital. They turned to Dr. Jakub Tolar who pioneered a bone marrow transplant procedure for EB patients.
“He and other children like him are why I do what I do, because there’s nothing comparable to making his misery or suffering less,” Dr. Tolar said.
Ultimately the transplant could toughen Anton’s skin, extending his life expectancy beyond childhood.
“They have a very clear and short lived future, so what we gave him is a future — a future that hasn’t existed before,” Dr. Tolar said.
But the healing isn’t just physical. Anton is now tackling challenges he never thought possible — he’s standing and walking with the help of a physical therapist.
“He just lacked the confidence,” Dr. Tolar said. “There’s no reason he couldn’t have done it, he was just scared.”
Dr. Tolar’s research has now moved to gene editing using stem cells.
Anton will deal with some health issues his whole life — there’s still no cure for EB.
For more information on EB or the effort to find a cure, visit EBResearch.org.