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Santa Rosa boy becomes ambassador for Down syndrome awareness

James O’Leary is many things - a goofy 5-year-old, a preschooler in? Santa Rosa, an open-heart surgery survivor and a charming kid with Down syndrome.

And now, he is a global ambassador for Nothing Down, an organization dedicated to changing the way the world views Down syndrome.

James is enrolled at Lattice Educational Achievement Preschool in Santa Rosa, an inclusive educational program that “provides an environment that fosters a sense of belonging, accomplishment and the joy of learning in all children.”

Nancy Alcott, executive director of LEAP, said, “James is a wonderful little guy who brightens up the program.”

Research shows positive effects for children with and without disabilities when learning alongside one another. In his class, James is known to comfort crying kids and bring smiles out of people.

“His teacher says he is the most empathetic kid,” James’ mom, Larkin O’Leary, said.

James is still considered nonverbal, but he has some communication skills. He happily yells words he knows, the names of his friends and his age - “five!”

He also knows over 300 sign language signs, covering numbers, letters, animals and more. His mom said the road has been challenging.

“We definitely go through days of mourning where we see other kids his age doing things he can’t do,” she said.

When James was born, he had a hole in his heart and was immediately rushed to San Francisco for surgery. This would be the first of 26 surgeries for James, three of them major.

“We were more concerned about him staying alive” than the Down syndrome diagnosis, his mom said. Days like Halloween are hard, because James can neither eat candy due to intestinal problems that force him to eat pureed food nor walk far since he has hypotonia, causing him to tire easily.

“I couldn’t go to mommy and me class because my son was having open-heart surgery,” O’Leary said.

But with the goal of promoting a message of acceptance and inclusion, Larkin O’Leary started an organization called “Just Two Moms” along with another parent of a child with Down syndrome.

Together, they travel to schools and do assemblies across Sonoma County, answering people’s questions about all disabilities.

“It’s just a label, that’s all it is. We all have labels,” O’Leary said.

James is one of 37 global ambassadors for Nothing Down. His mom said he loves getting his picture taken, making him perfect for the role.

She has been sharing details of James’ life, first on a blog and then on Facebook.

“It makes me cry that people are so thankful that I’m sharing his story,” she said.

Her message is clear - there’s a person behind every disability.

“They just want to be accepted and included,” she said, “but you also have to understand where they’re coming from.”

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