Nick Wiese has a face that sets him apart.
Wiese was born with a rare genetic disease, Apert syndrome, that causes craniofacial abnormalities, including fused skulls, fingers and toes. The 24-year-old often is found taking tickets at the Cranberry Cinemas, where he has worked part-time for two years.
Regular moviegoers have gotten familiar enough with Wiese that they greet him by name. Others, usually small children, will whisper about Wiese’s unusual appearance — sometimes loud enough for him to hear.
Occasionally Weis will wait for the parent to shush the child, but he’ll also amble over to talk to the children about his syndrome.
“I can understand why they can’t help making comments,” he said. “If I’m not busy, I’ll try to explain to them why I’m me.”
People will get a better chance to understand Wiese’s condition with an upcoming showing of Torey’s Distraction at the family-run theater. An award-winning documentary, Torey’s Distraction follows the life of Torey Harrah, who also has Apert syndrome, and her family over 10 years as she prepares for a surgery that has been performed only 18 times in the world. Along her journey to a new face, Harrah also tries to lead a normal life.
Wiese, a Wexford native who became friends with Harrah after meeting her at a retreat for the Children’s Craniofacial Association, said it was easy for him to identify with Harrah in the documentary.
Like Harrah, Wiese has had major surgery. Through much of his senior year of high school, Wiese wore a metal halo attached to his head after surgery to correct a severe underbite that made it difficult for him to eat.
Also like Harrah, Wiese was frequently teased because of his appearance.
“Basically, she and I went through the same things,” he said. “In her early life she was teased a lot, so I can relate to that because I was teased all through school. It was hard for me to make friends.”
These days Wiese has acceptance in his family, friends and at his jobs, Besides Cranberry Cinemas, Wiese works at the Baierl Family YMCA in Franklin Park.
“Many of the people who work here are my age,” he said of being employed at the theater. “It’s bittersweet.”
Jessica Levine, manager at Cranberry Cinemas, said Wiese is popular among his coworkers. An ardent movie fan since childhood, Wiese is known for making up names for the different movies in the auditoriums where he has cleaned after a viewing and then making his fellow employees guess which one he’s talking about.
“Nick is an interesting and exciting person. He’s fun to work with,” Levine said. “He works hard, and he really loves the theater, and it shows.”
When Wiese asked if he could use the theater for a fundraiser to raise awareness for the Children's Craniofacial Association she didn’t hesitate to get on board.
“I think in general it will foster an appreciation for a story, his story, that goes unnoticed,” she said. “People who come will also get to know him better as well.”
Torey’s Distraction will be shown at 7:30 and 9 p.m. Thursday. Tickets are $10, and all proceeds will go to CCA.
Wiese said Tisha Blood, the filmmaker behind Torey’s Distraction, will attend the event, as will Harrah’s mother. Harrah also might make an appearance if traveling from Texas won’t cause her to miss too much school, Wiese said.
“I’m planning to get as many people in the auditorium as possible,” he said.
September is Craniofacial Awareness month, and Wiese honors it by raising money for CCA. He credits the organization with bringing him hope and a sense of normalcy.
Since he joined CCA in 2006, Wiese said he has been to three family retreats sponsored by Cher, who played the mother of a boy with a craniofacial deformity in the movie Mask. He hopes to attend a fourth retreat with his family next summer in Arizona.
Most of all, he wants to raise awareness of Apert syndrome.
“Mostly I want people to get a better understanding of people who look different,” he said.