Chiari malformation, which affects an estimated 1 million people in the U.S, causes issues with brain tissue and can lead to serious neurological disorders affecting nerves, mobility, and eyesight.

Andrea Tobias, who lives with the condition, described the challenges of having what many call an "invisible disease."

"We call it the invisible disease you don't always see," Tobias said. "But we struggle and I do. For me personally, I'm going to speak for me. It's a struggle daily. But you know you have, we have to keep going."

For some families, surgical intervention has made a significant difference. Beth Dewert shared her son, Albey's, journey with the condition.

"It's been a lot better since surgery. He can do a lot more," she said. "He was 3, he was walking and talking and then he jus

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