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Teen hopes ‘Wonder’ film will inspire others with rare syndrome

Emily Cihla, afflicted with a rare genetic disorder called Treacher Collins Syndrome, looks on as Dr. Pravin Patel speaks during an interview Tuesday, Nov. 14, 2017, at Shriner's Hospital in Chicago. | Tim Boyle/For the Sun-Times

Emily Cihla was born without cheekbones and without fully formed ears. She had a cleft palate and a jaw so small it couldn’t support her tongue, leaving her unable to breathe. At 17, she has had 15 surgeries to help her eat, hear and speak.

Cihla has a rare genetic disorder called Treacher Collins Syndrome that affects only 1 in 10,000 to 1 in 50,000 individuals in the world, according to the National Organization for Rare Diseases.The syndrome, highlighted in the upcoming film “Wonder,” is characterized by abnormal shaping of the head and face — common symptoms include missing cheekbones, short jaws, drooping eyes and misshapen ears.

Until this year, all of Cihla’s surgeries have been for function, necessary for her to live a healthy life. Though not meant to improve her appearance, each surgery has drastically changed the young girl’s face.

“It was very scary, I would never know how I would look after every surgery and there was always an element of surprise,” said Cihla, who has received most of her care at Shriners Hospitals for Children — Chicago.

“I got really self-conscious and would look at myself in the mirror for two years on end and really not like how I looked,” said Cihla, “But I’ve tried to look inside myself for self confidence, instead of at my appearance.”

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Now, the high school senior, in the midst of applying to college, has embarked on a year of cosmetic surgeries that she hopes will make her like her appearance a bit more before heading off to a new school.

“As you’re slugging through senioritis, we hope to get all the surgeries done,” said Dr. Pravin Patel, M.D., who performed most of Cihla’s surgeries and consulted with “Wonder” makeup artist Arjen Tuiten. Patel is the chief of pediatric plastic and craniofacial surgery at Shriner’s and the Craniofacial Center at the University of Illinois, where he is also a professor of surgery.

“Emily’s last surgery we dissembled her facial bones, re-arranged them like pieces of a puzzle to try to create a more normal facial skeletal structure,” said Dr. Patel. “We used 3D technology to design the new face like an architect would come up with blueprints.”

“Life is too short to not to be who you really are,” says 17-year old Emily Cihla. | Tim Boyle/For the Sun-Times

Next, Cihla will choose a new set of ears. Though she can hear with the help of metal implants in her skull bones, her ears are small and low, making it difficult for her to wear glasses. The teenager is excited to get her ears pierced, something her mother said she’s always hoped she would do.

Cihla will pick her new ears from a 3D-printed library, and doctors will borrow cartilage from her ribs to build them. Doctors have often borrowed bone and fat from other parts of Cihla’s body to help form her facial structure, as they do with most TCS patients.

TCS is caused by mutated genes, and although it can be genetically inherited, it does not always run in the family. In Cihla’s case, there was no history of it in her bloodline. Symptoms appear at birth, and the severity varies widely — some patients may have a case so mild that it goes undiagnosed, while others may develop life threatening complications or brain and behavioral issues. In addition to difficulty seeing, eating, speaking and hearing, children with TCS also face the agony of multiple surgeries, the pressure of making up school work missed while recovering, and often, intense bullying.

“Wonder,” starring Julia Roberts and Owen Wilson, deals extensively with the harsh reality of children with TCS standing out in school. The film follows the story of Auggie Pullman, (played by Jacob Tremblay) a young boy with the condition.

Though Cihla said she never experienced bullying and has a great support system at Northside College Prep High School, she thinks the film will give kids with TCS someone to look up to.

“I’m looking forward to having someone in the media that represents me and people with medical issues” said Cihla, “It will be nice to see someone similar, it will kind of confirm everything I’ve been through and give me a new perspective on it.”

At Shriner’s, Cihla and her parents have worked with a pediatric psychologist, Dr. Kathy Kapp-Simon, M.D., since Cihla was four months old. Kapp-Simon said that Cihla has always been social and done well in school, but that many kids with TCS have difficulty developing positive self concept and believing that they can be successful and make friends. In Cihla’s case, she said the disease has given her a greater sense of who she is, no matter how she looks.

“Life is too short to not to be who you really are,” she said.

“Wonder,” based on the 2012 novel by R.J. Palacio, is now in theaters.