A little boy from Kansas, born with a rare condition, has become an inspiration around the world. A video, now seen by millions, captured the moments 2-year-old Roman Dinkel defied the odds and walked for the first time.

Roman has spina bifida, a birth defect that prevents the spinal cord from forming properly. He also had hydrocephalus, extra fluid around the brain. He had two surgeries on his brain before his first birthday, and one on his spine before he was even born.

Every case is different, but spina bifida affects every part of life.

Since CBS News first spoke to his parents, Whitney and Adam Dinkel, Roman is not just walking, but running. He also just got to go to Disney. But for Whitney and Adam Dinkel, who also have two older children, the breakthroughs are surrounded by constant questions. 

“When he gets a headache or something, we have to take that seriously. We can’t just be like ‘Oh, you’re fine,'” Whitney said.

“As parents we have to continue to check the boxes and be like ‘Is this a normal kid thing? Or is this a hydrocephalus thing? Or is this a spina bifida thing,'” Adam said.

Whitney said with spina bifida, you’re never fully “out of the woods.”

“You just kind of learn to live in the woods,” she added.

Their Facebook page lets people around the world learn more about spina bifida, as they share Roman’s journey and his message.

“He just shows what love should look like. For any human being, this is what the world should look like,” Adam said.

Learn more about spina bifida.

Jeff Glor

Jeff Glor has reported all over the world for CBS News since 2007. He was named anchor of the “CBS Evening News with Jeff Glor” in 2017.