Makayla Hainline has been waiting for a movie like “Wonder.”
It’s the tale of Auggie Pullman, a 10-year-old boy who loves “Star Wars,” Halloween and science. He also has Treacher Collins syndrome, a rare genetic condition affecting the way the face develops.
“Me and this Auggie kid are like brothers and sisters,” Makayla tells me, her blue eyes so bold not even her glasses can hide their brilliance. “We have a lot in common. He had a feeding tube like me. He had 27 surgeries. I had like four to five or maybe six. (She’s had 10.) I feel like a movie about a kid that has what I have makes me feel happy.”
Her mother, Angela, says she and her husband didn’t know their baby girl had the condition until she was born. Their oldest daughter, Mariah, did not have it.
Initially Angela wondered if she had worked too hard during her pregnancy. Was it her fault? Of course not. This condition touches only 1 in 50,000 newborns, often affecting the cheekbones, ears, jaw and eyelids, making it hard to eat, speak, hear and see. Surgeries and the team at Children’s Mercy Hospital help with the physical challenges. Family, friends and Makayla’s school help this Topeka family face the world.
Right from the start, Angela and her husband decided they would raise Makayla to be outgoing.
“We put her in school, and we’ve raised her to understand she is no different from anybody else,” Angela says.
But people stare. Sometimes they’re scared.
The movie is based on the 2012 best-selling novel by R.J. Palacio, whose own 3-year-old son once saw a little girl with a severe facial deformity in an ice cream shop and cried. Palacio grabbed her kids and left. Her shame led her to write “Wonder” as a teaching moment.
The film, opening Friday, stars Julia Roberts and Owen Wilson as the parents of Auggie (played by Jacob Tremblay of “Room”). The tearjerker does this sweet novel justice and should spread the teaching moments to an even wider audience.
This is why the film means so much to Makayla.
“Maybe people won’t think I’m weird no more,” the 8-year-old tells me. “People won’t stare and won’t be scared to ask me questions and stuff. They will understand I’m just a regular, rare, special little girl.”
I admit it. When I walk into Lexie Diskin’s house in Olathe, I stare. But I’m not staring at her face. I look directly into her hazel eyes — the same color as my mama’s. And her eyelashes are long and curl in a way that demands adoration.
Lexie laughs, insisting her big sister Ryleigh has even longer lashes. I’d say it’s a draw. Both of them read “Wonder” when it came out.
Fifteen-year-old Lexie was born with a cleft lip, cleft palate and a missing left ear. The whole left side of her face was underdeveloped. She has Goldenhar syndrome, a rare congenital condition. She’s had multiple surgeries (all at Children’s Mercy), almost as many as Auggie.
Just like Auggie, Lexie is not her face. She is more than a syndrome. She likes to laugh and bake and make up recipes in the kitchen. Her latest creations were chocolate-covered pretzels and quesadillas. Softball is her outlet.
“I like how you can just play and no one ever looks at you differently and you are all together like a team, like a family,” she says. “And they always have your back and it’s fun.”
When she started high school this year at Olathe South, she worried about meeting so many new people at once. But at least Ryleigh, a junior, was there.
Their mother Wendy says Lexie had an impact on the person her big sister has become and has given her 10-year-old brother, Cole, a soft heart: “They fight like cats and dogs like any siblings, but they love each other. When they were little on the playground, kids would ask, ‘What’s wrong with your sister?’ Ryleigh was her voice. She has always been protective.”
Ryleigh says Lexie has inspired her to become a teacher.
“You never know what someone is going through,” she says. “You can’t put others down for their difference and things they can’t control.”
Marching down the halls of Pauline Central Primary School in Topeka, Makayla shows me Mrs. Thorpe’s third-grade class display. She points out her math problems and her essay on her favorite thing to do — gymnastics because it’s healthy and makes her feel like a princess. But she wants to try soccer next year. I ask if it ever gets hard being in school and having surgeries.
“I have this catchphrase I say: Easy, peasy lemon squeezy,” she says and laughs. The more people learn about her, she says, the easier it is to connect. The entire third-grade class is going to see “Wonder,” courtesy of a donation from Advisors Excel financial planners in Topeka.
“People aren’t really afraid of me no more,” she says of her classmates, many of whom have known her since preschool. “They are happy to have me in school and they won’t be rude to me and they are nice.”
When she’s playing with her friends, they hold hands and stand really close and whisper, the way little girls do with their BFFs.
“My friends, they understand me,” Makayla says. “We like to hug each other and we always say hi when we see each other and help each other get through our problems.”
Reading is her favorite thing to do — especially the “Shelter Pet Squad” series by Cynthia Lord. She gives me a whole book review. When she grows up she wants to be a veterinarian, or a pediatrician or run for president. This weekend, she’s running her first 5K. Her mom says she likes to run because she’s faster than most. Makayla denies this with a smirk. “I like it because its healthy and fun.”
Lexie turned 15 on Sept. 20, a month after classes began. Ryleigh wanted to celebrate her little sister. So she sang “Happy Birthday” in the commons, where all of the students hang. Her friends joined in. Other students did, too.
Lexie ran away. She’s a little shy. But she’s gaining her own voice. What she most liked about “Wonder” is the way Auggie told his own story. I asked her to write out how she’d tell hers:
I am just like any other 15-year-old girl. I go to school, hang out with my friends, gossip about all the cute boys and play sports. I have my own style and personality that shapes me to who I am, and who I want to be.
But when people first see me they don’t see the person I really am, they just see the outside and don’t suspect that I would be like all the “normal” kids. They think I am some sort of monster with no ear, and that I can’t hear or speak for myself. (Not everyone feels) this way, and others may do it unintentionally, but deep down I can sense their confusion and judgment. I also realize that curiosity can take over, and you are just curious of the unknown.
But put yourself in my shoes, or someone else’s that is different than you. Would you want people to say hateful things or stare at you when you are out in public? I may not show it, but when this happens to me I get a wave of sadness all through my body.
I have grown accustomed to these things and the older I get the less it bothers me. The older I have gotten the more I realize that I cannot control what I look like, and God gave me this for a reason. He gives these sorts of things only to the people that he thinks can handle it and are strong on the inside and out. I see all my scars as battle wounds and remember all the hard times I’ve gone through to get where I am today. In some ways this can be looked at as a gift, and a way I can share my story with the world and make a difference in my community.
She doesn’t just want to share her story. She wants to go into pediatric nursing because the nurses at Children’s Mercy have been there for her through every surgery. She admires Auggie for pushing through the hard times. In the book and movie, the more comfortable he becomes with himself, the more people get to know him and slowly minds change.
“I’m just like everyone else,” Lexie says. “I just may look different on the outside.”
But if you meet her, don’t stare. Just look into those hazel eyes and say hello.
Makayla says she still gets nervous when she meets new people outside of school. Will they know she just likes to play Uno Attack, eat PB&J and watch “The Loud House” and “The Thundermans” like most 8-year-olds?
“I get scared they might be like, ‘What’s up with your face?’” she tells me. “I was born like this. I’m not mean or scary. Just because I look different doesn’t mean you can stare at me. It’s really rude.”
Her family helps her through her fears.
“My dad and my mom and my sister handle it,” she says. “I always feel safe with my family. They are a really good family and they love me a lot.”
People might get caught up in her facial anomalies, but she says her favorite part of her body is her heart. She holds both her hands up to her chest, forming a heart with her fingers.
“My heart pumps my blood into my veins,” she tells me. “Without my heart I wouldn’t be able to live.”
And if you even spent 10 minutes with Makayla, her heart would capture yours. She is a wonder.
Jeneé Osterheldt is a Kansas City Star columnist. On Twitter: @jeneeinkc
To learn more
Mission Hills filmmaker Jen Greenstreet made the short documentary “Just Like You — Facial Anomalies,” capturing the journey of four kids with facial anomalies. Just Like You films aim to create empathy and raise awareness by telling the stories of everyday kids. You can find it on YouTube.