Kansas City,
17
November
2017
|
08:46 PM
Europe/Amsterdam

Kansas City Star: "Wonder" Movie Gives These Kansas Girls Hope

Left: Makayla Hainline and her mom (Photo Credit: Shelly Yang)  Right: Lexie Diskin 

 

by Jenee Osterheldt

Makayla's Story

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.”

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 help with the physical challenges. Family, friends and Makayla’s school help this Topeka family face the world.

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.”

Lexie's Story

Fifteen-year-old Lexie Diskin 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.

“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.”

 

Read the full article via The Kansas City Star.

Learn more about Plastic and Reconstructive Surgery at Children's Mercy.