The old saying, “you can’t judge a book by its cover,” is never more true than for children born with craniofacial deformities. Now those touched in some way by them are hoping the world finally sees beyond their kids’ faces to realize just how wonderful their children truly are.
That’s why there’s a lot of optimism about what the new movie Wonder might accomplish. The movie, in theaters Friday, features the character of August Pullman, who has Treacher Collins Syndrome, a craniofacial syndrome.
It’s also the daily life of Kerry Lynch, a Chicago mom of three with another one on the way, and her sweet daughter, Mary Cate, who has Apert syndrome.
The last nearly six years of Lynch’s life, she says, have been filled with stress, anxiety, fear, hope, joy and an immense amount of love. And she says seeing Julia Roberts play out every one of those emotions as Auggie’s mom in the movie was incredibly humbling.
Lynch, who saw the movie two weeks ago, says she cried both happy and sad tears at seeing the book and many aspects of her and Mary Cate’s lives reflected back to her. She has used the book for years while talking to groups and schools about Apert syndrome and Mary Cate. And she is optimistic about the movie’s potential to bring awareness about craniofacial syndromes.
“This is going to be a pretty eye-opening thing for the world to get a little bit of a glimpse into what our lives are like, for kids like Mary Cate and Auggie, their parents and siblings and those who choose to be friends with kids like them,” she says.
Dr. Arun Gosain, president of The Plastic Surgery Foundation and a specialist in craniofacial anomalies in Chicago, says he’s glad Hollywood is making a movie like Wonder because the public tends to discount or prejudge people with facial deformities even though they are intelligent and just like everyone else.
“It lets people know that if we get away from judging children by their facial appearance, you have very vibrant children who would otherwise be locked away socially. No one will realize the gifts they have,” says Gosain, head of the Craniofacial Developmental Biology Laboratory at Lurie Children’s Research Center in Chicago.
At Lurie, a team of specialists work to support families and encourage the children to feel normal and do normal things.
“The more support the child has, the more it will bring out their natural skills and talents,” he says.
The American Society of Plastic Surgeons says nearly 220,000 maxillofacial and craniofacial procedures were performed in the United States during 2016. That includes 11,905 surgeries for cleft lip and palate repair and 4,585 for craniofacial reconstruction.
Gosain says a child with craniofacial disorder normally undergoes 20-30 surgeries by the time they reach 18, something that takes a lot of resolve by both the parents and the child.
“We always believe in surgery earlier than later because of the psycho-social impact on the children,” says Gosain.
Ultimately, though, the book and movie’s message is about choosing kindness, something Lynch and Mary Cate have devoted themselves to building. They have visited more than 125 Chicago area schools to help other kids learn about the importance of empathy and kindness, while also teaching people about craniofacial syndromes.
For her part, Mary Cate understands the concept of the book and as a kindergartener, is more aware of people staring at her and saying mean things. It makes her sad, Lynch says. “It has been difficult,” Lynch says. “… I try to keep encouraging her to smile and say hi.” She also tells her daughter that other people’s reactions are not something she should dwell on.
Mary Cate, who loves being in kindergarten, does arts and crafts and is very outgoing. She will see the movie on Friday with her classmates.
