‘I’m not that strong, I’m just brave’: Boy not expected to live past infancy defies odds

Ohio

ASHTABULA COUNTY, OH (WJW) — By all accounts, Carson Locher is a walking, talking miracle. The third-grader wasn’t supposed to survive birth, let alone live to be 9.

“Well, I wasn’t supposed to live past a year old, then the doctor said I wouldn’t live past 1, then the doctor said I wouldn’t live past 2, no 5,” said the Ashtabula County, Ohio, boy.

Early in the pregnancy, doctors found a tear in the uterine wall and told Carson’s mom, Jessie Beals, that she would likely miscarry.

Then during the first sonogram at 20 weeks, she said everyone in the exam room fell silent.

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

When he was born a month early in August 2011 on his sister’s fifth birthday, he wasn’t breathing, and again, Beals said, they were told he wouldn’t live to see his first birthday.

They could see he had a severe cleft pallet and learned there were several other very serious issues.

“He had lung problems, he had heart issues, but nobody was sure what was wrong with him,” said Beals.

However, Carson just kept defying the odds, undergoing his first surgery at 8 months. He has now had 17 operations and 36 hospital stays.

“I mean, I’m not that strong, I’m just brave,” said Carson.

He wasn’t supposed to be able to walk, but one Christmas, as a toddler, he just started walking. He wasn’t supposed to be able to talk, but around age 6, he just started talking, too.

“He may be the cutest kid on the planet, and I really mean that,” said Dr. Richard Grossberg, a Pediatrician specializing in Neurodevelopmental Disabilities at University Hospitals Rainbow Babies and Children’s Hospital.

Grossberg and a team of doctors, nurses therapists and genetic experts began working with Carson and ultimately made the diagnosis of CHARGE Syndrome.

“It’s rare. It’s 1 in 10,000 live births,” said Grossberg, “The letters are an acronym and stand for different birth anomalies.”

CHARGE Syndrome is a complex syndrome that causes multiple life-threatening birth defects, including coloboma of the eye, heart defects, atresia of the choanae, retardation of growth and development and ear abnormalities.

“The trachea where you breathe may not form properly. They can have difficulties with growth and development and feeding,” said Grossberg.

But Carson just keeps thriving.

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

Carson, who is right on track in school as a third-grader, can now play sports, swim, go fishing and even learned how to do cartwheels from watching his sister.

“If you tell him he can’t do it, he’s gonna show you,” said Beals.

Carson also started his own YouTube channel and is raising money for the CHARGE Syndrome Foundation.

He especially likes talking about his condition to raise awareness and to educate people, particularly those who can be unkind.

“This is truly a big thing for me,” said Carson. “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.”

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

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