A 4-year-old Tennessee boy born with a birth defect so rare that doctors believe there are only 50 cases of it worldwide is learning to navigate the world without eyes.

When Christian Buchanan was born Feb. 18, 2011, doctors weren’t sure what to expect, The Tennessean reported. At the 18-week ultrasound, doctors told his parents, Lacey and Chris Buchanan, that their first-born son possibly had a cleft palate, but they didn’t know how severe.

“It was really, really bad was all they told us,” Lacey told The Tennessean. When he was born, parts of his skull were exposed and his mouth couldn’t close. The lines of his cleft extended past his cheekbones and up to his eyes, which never developed, the newspaper reported. Doctors diagnosed him with Tessier Cleft Lip and Palate.

At just four days old, Christian underwent his first surgery to place a feeding tube in his stomach and close the exposed parts of his skull. He and his parents spent a month in Vanderbilt University’s neonatal intensive care unit. 

“Their kind of courage in the initial setting was really notable,” Dr. Stephane A. Braun, the plastic surgeon who operated on Christian, told The Tennessean. “It’s a scary diagnosis. It comes with a lot of uncertainty.”

The Buchanans at first faced a lot of backlash from the public when they would bring Christian out to stores. Lacey created a YouTube video that went viral, during which she recalled times when people would ask her why she didn’t abort her child.

“A world without Christian is not a better world,” Lacey told The Tennessean. Lacey keeps her followers updated through a Facebook page, chronicling the adventures of Christian, his younger brother, Chandler, and their trusty companion, dog Hero.

He goes to several therapies weekly to work on his motor skills, including learning to move his mouth to talk. Because of his cleft, he cannot eat solid foods and must have his food puréed, and he is learning to use a cane to help him navigate.

The family has also published a book “I Want to Be Super” and any proceeds will go toward Christian’s medical fund.

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