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Film’s story of acceptance hits home

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Story aligns with life for local family

By Kacie Goode

Gathered in the movie theater a few days before Thanksgiving, Caroline Carwile joked about how emotional her parents and siblings became as they watched the story unfold on screen. From the placement of the too-familiar jaw distraction scar to the collection of hospital bracelets, the story of Auggie Pullman in “WONDER” hit closer to home for the Bloomfield family than most in the audience.

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“I really appreciate how the whole movie handled a positive, supportive family,” said her mom, Sandy. “I think they got to the heart of what it is like.”

Caroline, 11, doesn’t have Treacher Collins syndrome — the condition displayed by actor Jacob Tremblay in the film-adaptation of R.J. Palacio’s bestseller — but she does have Nager syndrome, a genetic condition, which presents in similar ways with craniofacial abnormalities.

As with Treacher Collins, an underdeveloped or small jaw is common, and the ability to breathe, eat and speak may be affected.

“Usually with Nager syndrome, it impacts the limbs as well,” Sandy said, such as the length of the arms or how the hand is formed. Most commonly, the thumbs are affected, as was the case with Caroline.

When Caroline was born, she had thumbs, but they were underdeveloped and not functional. One of her first surgeries included an index finger pollicization, a procedure moving the index finger to the thumb position. While she only has four digits on each hand as a result, her hands are now fully functional.

“My friends, they all think she can draw better than anybody else,” with just four, said her sister Vivian. “She’s just like anybody else.”

Even in the classroom, Caroline embraces her differences, giving “high fours” instead of “high fives” when celebrating something.

The severity of how Nager syndrome affects development is different with each child, and Caroline has been fortunate in many ways to have full use of her limbs, the ability to eat and breathe on her own, and to be able to hear with bilateral hearing aids. When she was born, her airway was not so impacted that it required a breathing tube, but she did use a feeding tube for the first year.

One of the biggest challenges Caroline continues to face is with speech, and speech therapy and several surgeries have worked to improve her ability to communicate because of how her jaw and mouth are formed.

For Caroline, from birth to age 2 was a high surgery time, including the hand surgeries and her first jaw distraction procedure to lengthen the jaw. About three years ago, she had another jaw distraction.

“They are doozies,” Sandy said of the procedures, which can include the short-term presence of metal equipment around the jaw. “But they do make a big difference,” in terms of both appearance and function.

Caroline will likely not need another jaw surgery until she is a little older, as surgeons work with her as she grows.

“It’s like her jaw has its own timetable,” Sandy said. “When the rest of her is growing, sometimes it doesn’t keep up.”

While Caroline has been in and out of hospitals — even pointing out she knows the way to different departments without even thinking — 2017 has been a surgery-free year for her so far, and her family jokes about wrapping her in bubble wrap until the new year.

The film, which hit local theaters in November, and the book, released in 2012, tell the story of Auggie Pullman as he enters public school for the first time and is faced with stares and taunts for the way he looks. Auggie was born with facial abnormalities, and the story focuses on his search for acceptance among his peers. Beyond a genetic condition, there are similarities between the film’s characters and Caroline’s family. The mom in the story is an illustrator and home-school teacher, and Sandy is an art teacher. The older sister in the story is involved in theater, and Caroline’s eldest sister Vivian is active in the high school drama department. But fortunately for Caroline, a fifth-grader at Bluegrass Christian Academy, she has not encountered the same cruel atmosphere that Auggie faces in the story, particularly from antagonist Julian. 

“When people have a relationship with her, it’s not that they see Nager syndrome,” Sandy said, they just see a happy, smart and friendly fifth-grade girl. “But when we are out in public or a new place, you get those lingered stares. She’s definitely aware of that.”

Sandy said she appreciated how the film showed how some interactions can be controlled and others can’t. Caroline has learned how to respond to those.

“If someone is curious, that’s a great thing. They want to understand,” she said. “But there is a difference when someone is being rude or ugly.”

In the film, Auggie has a loving family and Caroline has an even larger one, with parents Richard and Sandy, and older siblings Vivian, Parker, and Anna Claire. Auggie also develops some positive relationships with characters Jack, Will and Summer, and for Caroline, “She has a lot more of those in life than Julians,” Sandy said.

“I did not like Julian whatsoever,” Caroline said of the movie, adding that she usually likes the “bad guy” in films. But when it comes to school, “There’s nothing really different,” she said. “I don’t have many people who are mean.”

There are some activities she struggles with, such as dodge ball or certain exercises, she said, but she excels in some other activities. She enjoys art, takes sign language, dance and fencing after school, has performed with Bardstown Community Theater, and her favorite subject in school is math.

While “WONDER” is a fictional story inspired by a real-life encounter, its release has inspired many around the world to connect and talk about conditions such as Treacher Collins syndrome, Miller syndrome, Nager syndrome and other craniofacial conditions. YouTube videos and projects such as “I am Auggie Pullman” have allowed many children and young adults to share their stories, and since many of these syndromes are rare in nature, those connections and networking can be important.

While Nager syndrome is considered rare, its exact prevalence is unknown because many cases go misdiagnosed or undiagnosed depending on the severity and symptoms. While geneticists have identified the genes that cause Treacher Collins and Miller syndromes, the gene that causes Nager syndrome has not yet been identified, according to the Johns Hopkins All Children’s Hospital. While Nager syndrome can be inherited, most cases are sporadic, and can occur in people with no family history of the condition.

When Sandy was pregnant with Caroline, the youngest of four, it was a normal healthy pregnancy. Her dad, Richard, said there were no concerns, but presenting issues during Caroline’s birth, such as the small jaw and ear issues, hinted toward Nager syndrome and the family met with a geneticist.

“We kind of knew coming home from the hospital that this is what we were looking at,” Sandy said, but still, they were thrust into a new, scary medical world full of terminology they were unfamiliar with. They had to become experts on what they needed to know, and are thankful for the doctors, surgeons and nurses who helped. Since Caroline’s birth, though, the family has been able to connect with organizations, chat groups and other craniofacial groups to network with other families, particularly through social media. 

“People usually have questions about procedures and doctors,” Richard said, and many children end up seeing the same doctors and surgeons or visiting the same hospitals for surgeries.

The Carwiles still keep in contact with a family from Washington, D.C., who has a daughter the same age as Caroline with the same syndrome.

“There’s this family that you become a part of, even from a distance, and you root for these kids,” Sandy said of networking and building those connections with one another.

In addition to being appreciative of those connections, the Carwiles are appreciative of the kindness and support they have seen elsewhere, such as at Caroline’s school and at Bloomfield Baptist Church, where Richard serves as pastor. But even though positive people surround Caroline, Sandy still becomes concerned at times that she will encounter less kind people in the world.

“What will it be like going to a public school for the first time?” Sandy said, because Caroline’s current school only goes to the eighth grade. But Caroline has also proven her resiliency in that area.

“On the mom end, I keep holding my breath, thinking something is going to be really hard,” she said. “But she always just zooms through. She’s a trooper.”

Caroline also has three older siblings who have “got her back.”

“There are times I get scared or upset that people will be mean, just because she is different,” said brother Parker, but having gone through high school, he’s seen kindness demonstrated from his peers. “She always gets through everything and she motivates me, because she’s gone through so much and always has a smile. It’s encouraging to me,” he said.

Additional information on Nager syndrome and other conditions can be found online at the U.S. National Library of Medicine website, www.nlm.nih.gov. “WONDER” is available at area bookstores, through e-readers and is still in theaters.