KINGSVILLE — Carson Locher, 9, was born with CHARGE syndrome, a disorder caused by a gene mutation.
The disorder affects many areas of the body. CHARGE is an abbreviation for several of the features common in the disorder, such as coloboma, heart defects, growth retardation, ear abnormalities and other physical difficulties.
Carson is receiving treatment at Rainbow Babies and Childrens Hospital. He has had multiple surgeries with many more to come, but despite it all, the Kingsville Elementary School student doesn’t let it get him down.
Carson said he loves to play the online video game, “Fortnite.” When he grows up, Carson wants to be “a good dad” and a “YouTuber,” he said.
His mother said he’s well on his way, as he already has 1.22K subscribers on YouTube.
“He is a very active boy who loves to dance, swim and play his video games despite his being deaf in his right ear and blind in his left eye,” said his mother, Jessie Beals. “He was born with no inner ear, meaning balance also is an issue.”
Carson is the size of a 5- to 6-year old but is taking growth hormones, which he injects himself every night. He’s fed through a tube in his stomach 14 hours a day.
“He does eat and drink some by mouth,” Beals said. “He goes to class at Kingsville Elementary on his own, but the school nurse cares for his medical needs, treatments and medications. He also gets speech therapy once a week.”
Carson has a new project to keep him busy — he’s raising money for his CHARGE Syndrome Foundation at the Whippy Dip Ice-cream Shop on Route 20.
“He loves volunteering his time serving the customers,” Beals said. “He hopes to do it again soon.”
Carson’s older sister, Jadynn, who shares the same birthday of August 18th just 5 years apart, supports him by raising awareness at her school.
“When people ask what’s wrong with her brother, she’s always willing to explain,” Beals said. “Ever since grade school, she’s always written about him in her school writings.”
He also has a brother, Ace, on his dad’s side who lives with his mother.
“Ace is his gaming buddy,” Beals said.
To help Carson raise money for CHARGE Syndrome Foundation, stop by the Whippy Dip, 2448 Route 20, North Kingsville.