Nick Wiese’s looks set him apart, and he still gets questions about his appearance—and sometimes stares.
Weise was born with Apert syndrome, a rare genetic disease that causes craniofacial abnormalities, including fused skulls, fingers and toes. F, he is hosting a showing of Torey’s Distraction at
“I feel a responsibility to keep educating people about my condition,” Wiese said. “It’s a very rare condition, and not many people know about it.”
An award-winning documentary, Torey’s Distraction, follows the life of Torey Harrah, who, like Wiese, has Apert syndrome. Harrah is preparing for a surgery that has been performed only 18 times in the world. Along her journey to a new face, she also tries to lead a normal life.
The film will be shown at 7:30 p.m. Wednesday, Sept. 19, at the family-run theater.
Wiese, who works part time at Cranberry Cinemas, also will be the host for a showing of Mask, starring Cher as the mother of a boy with a craniofacial deformity, at 7:30 p.m. Thursday.
Tickets to the shows are $10 per person with proceeds benefitting the Children’s Craniofacial Association, a nonprofit dedicated to improving the quality of life for people with facial differences and their families.
September also is Craniofacial Awareness Month.
Wiese said last year’s inaugural event raised about $2,000 for the organization. This year, he hopes to raise even more for the nonprofit, which he joined in 2006. Since then, Wiese has attended several of the organization’s family retreats.
“I figured I’d bring it back to see if I could top that,” Wiese said. “I’m shooting for $3,000.”
Tisha Blood, the filmmaker behind Torey’s Distraction, attended last year's showing and spoke to the crowd, Wiese said. This year, he plans to speak solo to the audience.
He’s hoping for a good turnout.
“I got a lot of support from my family and friends last year, so I hope they do it again this time,” he said.
He also hopes to continue to educate the public about craniofacial conditions. Wiese, who in addition to his job at Cranberry Cinemas also works at the Baierl Family YMCA in Franklin Park, said he often tries to speak about his syndrome to the very people who give him stares.
“It's something I feel strongly about,” he said. “I just thank God that I’m able to do it.”