Despite being in pain every day, Anton Delgado is a joyful, playful 5-year-old boy.
On Monday, NBC's "Today" told the heartbreaking, yet inspiring story of this "butterfly child" and how his adoptive family helped give him a chance at a better life.
Abandoned by his parents
Anton was born a twin in Moscow, but was abandoned by his biological parents because he had a rare genetic skin condition called epidermolysis bullosa (EB) – his skin is so fragile that even the slightest amount of friction causes painful blisters.
People with the disease are often called "butterfly children" because their skin is fragile, like the wings of a butterfly. They lack the protein that binds the layers of skin together. Without it the skin tears apart, blisters and shears off, which leads to severe pain, disfigurement and wounds that never heal, EB Research Partnership says.
EB is not curable, and most people with the disease don't live longer than 20 to 30 years.
Knowing this, Vanessa and Jason Delgado, of Texas, adopted Anton from the Russian hospital in 2012, because they couldn't imagine him battling the pain of this disease without a mother.
Treatment at the U of M
Now there's hope that Anton will have an even better future after undergoing a bone marrow transplant at the University of Minnesota Masonic Children's Hospital back in March.
"For us, the risk of not doing a transplant far outweighed the risk of doing it. We knew we had to do something to help Anton," Vanessa Delgado said in her story on "Today."
The hope is that the procedure, which was pioneered by Dr. Jakub Tolar at the U of M, will help reduce blistering and heal the skin.
“They have a very clear and short lived future, so what we gave him is a future — a future that hasn’t existed before,” Tolar told WCCO earlier this year.
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"The transplant was life-changing. Anton showed improvement only seven days afterwards; he is now growing only donor cells. It's not a cure, but it will give Anton improved quality of life," wrote Vanessa Delgado.
For the last few weeks however, he's been back in the hospital because of a high fever. (Click here to see a Facebook page that gives updates on Anton.)
"But despite that, he is such a happy kid," Vanessa Delgado wrote. "He has a joyful personality and everyone loves him because he is so charming and sweet."
Dr. Tolar's work
The U of M is the first and only place that offers blood and marrow transplants as treatment for severe types of EB, according to the U’s website, and Tolar is working to advance gene and cellular engineering research, which have the potential to transform the quality of life for people suffering from the disease, a news release says.
Vedder also met with patients at the hospital, some of whom got the chance to attend the show.