'Today' tells the heartwarming story of abandoned 'butterfly child'

Author:
Updated:
Original:

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.

This embed is invalid

"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.

Dr. Tolar's work was highlighted last fall when Pearl Jam's Eddie Vedder – a founding member of EB Research Partnership – brought the doctor on state during a concert at the Xcel Energy Center.

Vedder also met with patients at the hospital, some of whom got the chance to attend the show.

https://www.youtube.com/watch?v=hXN4GpisLMU

Next Up

northfield community education center

Northfield school fires employee who allegedly gave melatonin to infant

It's against district policies to give a child anything without a parents' permission.

state hockey tournament, mshsl

MSHSL approves 3 calendars to start winter sports as soon as Dec. 21

The start date will depend on whether the state shutdown is lifted.

hydrocodon-DEA

Drug overdose deaths up 31% in the first half of 2020

Overdose deaths started to increase sharply in March, which coincides with the state-ordered lockdown for the COVID-19 pandemic.

los ocampos

Video: Vehicle crashes into St. Paul restaurant

The fire department is on scene addressing a gas leak.

covid-19, coronavirus

Latest county infection rates are sky-high throughout Minnesota

Kandiyohi County is one of the hardest hit counties in the state.

Jenna Fish

Family's warning after teen's tragic death from CO poisoning at Thanksgiving

A 17-year-old girl from Delano died after Thanksgiving due to carbon monoxide poisoning.

Plainview

More than $12K donated to MN gym owner who refused to close

The small business is located in town in Wabasha County.

radio station, microphone

MPR, The Current launch new weekly segment called 'The Warming House'

The program will feature feel-good entertainment amid the pandemic.

coronavirus, COVID-19 test

Dec. 3 COVID-19 update: 92 deaths marks MN's 2nd-highest total

The deaths continue to surge amid the worst of the pandemic so far.

mohamed amin bayle idd booking photo

2 men charged in connection to fatal shooting at Bloomington apartment complex

Shakur Freed Muhammed, 22, of Hopkins, was fatally shot Monday morning.

Screen Shot 2020-12-03 at 9.11.36 AM

Hewing Hotel finds workaround to shutdown, delivering 7-course meal to rooms

The hotel will convert guest rooms into dining rooms for three-hour reservations.

Related