Boy With ‘1 in 10,000’ Birth Disorder Defies Odds: ‘I’m Not That Strong, I’m Just Brave’

March 11, 2021 Updated: March 22, 2021

A young Ohio boy who wasn’t expected to live past infancy has defied the odds. Now, at the age of 9, he is tackling life head-on and refuses to let anything hold him back.

Born preterm with a rare birth disorder, a severe cleft palate, and serious lung and heart issues, doctors predicted that Carson Locher didn’t have long to live.

Doctors didn’t expect Carson’s mother, Jessie Beals, to have a full-term pregnancy. Early on, they discovered a tear in her uterine wall and said she would likely miscarry, reported Fox News.

Epoch Times Photo
(Courtesy of Jessie Beals)

At 20 weeks in utero, little Carson was still growing strong, but doctors detected severe issues during his first sonogram.

“It got really awkward and they brought in more techs and the doctor and nobody really talked after that,” Beals told Fox News. “They weren’t 100 percent sure what was wrong but noticed his head was growing faster than his body.”

Carson, who was born in August 2011, four weeks early, was not breathing. Beals said her son had lung problems and heart issues, but “nobody was sure what was wrong with him.”

Epoch Times Photo
(Courtesy of Jessie Beals)

Despite the profound issues present at his birth, Carson proved to be a fighter.

The tiny warrior underwent surgery as early as 8 months old, and in his 9 years of life, he has had a total of 17 operations and 36 hospital stays, the report said.

Despite his life challenges, the Ashtabula County kid remains humble about his determination.

Epoch Times Photo
(Courtesy of Jessie Beals)

“I mean, I’m not that strong,” Carson told Fox News, “I’m just brave.”

It was also predicted that Carson wouldn’t be able to walk or talk, but he’s tackled that prognosis, too. Indeed, he started walking as a toddler, and he started speaking at around age 6.

“I wasn’t supposed to live past a year old, then the doctor said I wouldn’t live past one, then the doctor said I wouldn’t live past two, no five,” Carson said.

Epoch Times Photo
(Courtesy of Jessie Beals)

Dr. Richard Grossberg, a pediatrician who specializes in Neurodevelopmental Disabilities at University Hospitals Rainbow Babies and Children’s Hospital, ultimately diagnosed Carson with CHARGE Syndrome, a complex condition that causes numerous life-threatening birth defects.

The acronym CHARGE stands for Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and development, Genital anomalies, and Ear abnormalities.

“It’s rare, it’s one in 10,000 live births,” Grossberg told the outlet.

Still, Carson has beaten the odds and pursues a life full of sports and activities, just like most other 3rd-graders his age. Grossberg said that Carson “may be the cutest kid on the planet.”

“He goes to school and does quite well given he has this disorder,” Grossberg said. “My hope is Carson will live a normal lifespan, I’m optimistic about his future.”

Epoch Times Photo
(Courtesy of Jessie Beals)

Carson enjoys sports, swimming, and fishing, and is keeping up with his schoolwork. The young man learned how to do cartwheels from his older sister, with whom he shares a birthday.

The proud mom Beals said that her little son is determined to defy all odds. “If you tell him he can’t do it, he’s gonna show you,” Beals said.

“I call him my hero,” she said, “a lot of people never meet their hero, but I truly have given birth to mine. He has a heart of gold.”

Epoch Times Photo
(Courtesy of Jessie Beals)

A family member even posted a video of him dancing on stage in April 2019, whipping out moves you might not expect from someone who was told he would never walk.

The brave boy is adamant about educating others about CHARGE syndrome and has even started a YouTube channel to raise awareness and raise money for the CHARGE Syndrome Foundation.

“This is truly a big thing for me,” Carson told Fox News. “Very mean people, I feel like it will really help them, the very language they use, and who they do it to. I think it will really help them understand what this is all about.”

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