He has one of the world's rarest birth defects. Here's what the experience taught his mom.

The inspiring story of how a mother's love conquered people's fear.

When Lacey Buchanan was 23 weeks pregnant, she was told that her baby would probably die.

After her 18-week ultrasound, doctors had noticed something was wrong. Most likely, they told her, it was a cleft palate. But as more time passed, they grew increasingly concerned.

And by the time she arrived at the hospital to deliver her baby, no one knew if he would live.


To everyone's surprise, though, her son was born and he survived.

But he was born with a condition so rare that it's one of only 50 recorded cases in the world Tessier cleft lip and palate, classifications 3, 4, and 5.

This condition, induced by amniotic band syndrome, caused her son's skull to fail to knit together in the womb, resulting in a large V-shaped cleft from his mouth into his eyes. As a result, Christian was born without eyes. He couldn't even close his mouth.

The team at Vanderbilt University Medical Center had never seen a case like it.

Image via Lacey Buchanan, used with permission.

Lacey and her husband, Chris, were overjoyed that their son was alive. But they were also completely overwhelmed. They couldn't take their newborn home right away, and he needed surgery when he was just four days old to close an exposed part of his head.

Then, before he turned three months old, Christian needed a second surgery.

For Lacey, this was extremely difficult.

Not only was she a new mom with a baby in and out of the hospital, but she was also a law student with a full-time job. It was hard to balance everything, and at one point, she said, she had a breakdown.

"I was thankful that Christian had lived, but there was a point when I started saying, 'Why me? Why my child? What have I done to deserve this?'" she recalls.

"Motherhood can make you feel so ill-equipped," she says. "It can make you feel like you're constantly failing. Am I doing enough? Am I screwing up this little tiny human?"

Image via Lacey Buchanan, used with permission.

Then, when the family started taking Christian out in public, she felt judged.

People would point and stare. They would even come up to Lacey and make rude, hurtful comments.

"What's wrong with him?" people would ask. And when Lacey posted a picture of her young son on Facebook, one woman even told her that she was selfish for not aborting him.

These comments really upset Lacey — they felt like personal attacks on her and her son. And they were from strangers.

But instead of giving up, Lacey decided to be proactive and stand up for herself and her child. So she made a video — with handwritten notecards — to explain what happened to him.

Soon, her inbox was flooding with calls, messages, and notes of encouragement. The world had seen Christian, and they wanted to let her know that they cared about him.

"I was shocked. Absolutely shocked," Buchanan says. As a mother, she felt validated. Suddenly, everything didn't seem quite so hard.

Five years later, Christian is a happy, active little boy. He takes karate lessons.

Image via Lacey Buchanan, used with permission.

He plays Christmas carols on the piano.

Image via Lacey Buchanan, used with permission.

He loves Superman.

Image via Lacey Buchanan, used with permission.

And though he can't see, he is still just a normal little boy who likes playing outside in the fall leaves.

As for his mother, Lacey, she's fulfilled her childhood dreams of becoming a lawyer.  

Image via Lacey Buchanan, used with permission.

And she's planning to use her new law degree to help mothers who are struggling to navigate the complex bureaucracy of disability law, like she once did.

To someone unfamiliar with how the law works, the red tape can be overwhelming, she says. "I wouldn't have even known this world existed if it hadn't been for Christian."

She also decided to write a book about her family that hits bookshelves Jan. 10, 2017.

Being a parent is one of the hardest jobs there is, and all parents, at one point or another, doubt themselves.

Though it was scary for Lacey to balance work and school with being a mom to Christian, she succeeded. Having him was a gift in a different kind of wrapping paper, she says.

And it taught her to be a better mom and to be a better human.

And the biggest lesson she learned is also the biggest piece of advice she has for other mothers: "You are enough. If you weren't enough, you wouldn't have had this child."

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Disney has come under fire for problematic portrayals of non-white and non-western cultures in many of its older movies. They aren't the only one, of course, but since their movies are an iconic part of most American kids' childhoods, Disney's messaging holds a lot of power.

Fortunately, that power can be used for good, and Disney can serve as an example to other companies if they learn from their mistakes, account for their misdeeds, and do the right thing going forward. Without getting too many hopes up, it appears that the entertainment giant may have actually done just that with the new Frozen II film.

According to NOW Toronto, the producers of Frozen II have entered into a contract with the Sámi people—the Indigenous people of the Scandinavian regions—to ensure that they portray the culture with respect.

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Though there was not a direct portrayal of the Sámi in the first Frozen movie, the choral chant that opens the film was inspired by an ancient Sámi vocal tradition. In addition, the clothing worn by Kristoff closely resembled what a Sámi reindeer herder would wear. The inclusion of these elements of Sámi culture with no context or acknowledgement sparked conversations about cultural appropriation and erasure on social media.

Frozen II features Indigenous culture much more directly, and even addressed the issue of Indigenous erasure. Filmmakers Jennifer Lee and Chris Buck, along with producer Peter Del Vecho, consulted with experts on how to do that respectfully—the experts, of course, being the Sámi people themselves.

Sámi leaders met with Disney producer Peter Del Vecho in September 2019.Sámediggi Sametinget/Flickr

The Sámi parliaments of Norway, Sweden and Finland, and the non-governmental Saami Council reached out to the filmmakers when they found out their culture would be highlighted in the film. They formed a Sámi expert advisory group, called Verddet, to assist filmmakers in with how to accurately and respectfully portray Sámi culture, history, and society.

In a contract signed by Walt Disney Animation Studios and Sámi leaders, the Sámi stated their position that "their collective and individual culture, including aesthetic elements, music, language, stories, histories, and other traditional cultural expressions are property that belong to the Sámi," and "that to adequately respect the rights that the Sámi have to and in their culture, it is necessary to ensure sensitivity, allow for free, prior, and informed consent, and ensure that adequate benefit sharing is employed."

RELATED: This aboriginal Australian used kindness and tea to trump the racism he overheard.

Disney agreed to work with the advisory group, to produce a version of Frozen II in one Sámi language, as well as to "pursue cross-learning opportunities" and "arrange for contributions back to the Sámi society."

Anne Lájla Utsi, managing director at the International Sámi Film Institute, was part of the Verddet advisory group. She told NOW, "This is a good example of how a big, international company like Disney acknowledges the fact that we own our own culture and stories. It hasn't happened before."

"Disney's team really wanted to make it right," said Utsi. "They didn't want to make any mistakes or hurt anybody. We felt that they took it seriously. And the film shows that. We in Verddet are truly proud of this collaboration."

Sounds like you've done well this time, Disney. Let's hope such cultural sensitivity and collaboration continues, and that other filmmakers and production companies will follow suit.

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