Agnes Koury, 8, is the middle child of three sisters. In the middle, she’s between two girls who live with mitochondrial disease.
Agnes bridges the gap between them, and her exposure to special needs children has compelled her to reach out and include them.
In the third grade at McKee Road Elementary, Agnes is a lunch buddy with someone from the school’s Exceptional Children program. She rides the special needs bus with her older sister, Bewlay, every day. (Bewlay has severe autism as a result of mitochondrial disease.) And she wants people to unite for a cure for mitochondrial disease.
Mitochondrial disease happens when the body’s cells have dysfunctional mitochondria, which keeps cells from producing the proper amount of energy, according to the Foundation for Mitochondrial Medicine’s website. The disease can affect any organ.
In an email, McKee Road Principal Beverly Newsome said Agnes “is constantly caught caring.”
“She’s just a perfect role model for our students,” said Jeremy Lundgren, the school’s assistant principal. “We want them to receive and interact and accept like she does.”
Last year, Agnes galvanized her school to support a cure for mitochondrial disease by taking part in an annual walk. She went on the morning announcements to encourage classmates to participate and also convinced an area restaurant to give a day’s proceeds toward research for the disease.
“Agnes handled the whole thing,” said her mom, Christy Koury. Agnes met with the manager and told him, “ ‘I want to do a fundraiser at your restaurant because I really like your restaurant,’ and of course, the manager was all over it,” Koury said.
In support, many classmates and teachers ordered food there, Koury said.
In school, Agnes’ favorite thing to do is write. On her own time, she enjoys writing fictional stories, typically about fairies. (Nonfiction, she said, often seems too hard because it’s tricky to accurately describe real events.)
“In my lifetime since I’ve started writing, I’d say I’ve written 12 fiction stories,” Agnes said.
Does she want to write books when she grows up?
No. “I’d rather design clothes and hire people to model them.”
Indeed, Agnes selected a high-fashion outfit for her interview with the Observer, from peacock-feather earrings to a long houndstooth coat over her dress.
Her mother suspects she might be a high-fashion scientist, particularly after Agnes expressed much interest and enthusiasm while she watched her mother donate platelets.
Whatever Agnes does, it’s clear she’ll continue advocating for kids with special needs, and, as adults will attest, being inclusive.
“I think sometimes some people just won’t have anyone to play with if they’re not included,” Agnes says with a shrug.
Lundgren said she is wise beyond her years: “She’s just special.”
Ruebens: 704-358-5294; Twitter: @lruebens
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