Freddie Seitz’s story is inspiring in so many ways.
Seitz was not supposed to survive the night the day he was born, but he’s now 25, a college graduate and a recently engaged man.
Because of Goldenhar Syndrome, he was born with a host of life-threatening health issues, but the most visible manifestation of the syndrome can be found in his face, which is, well, different.
Seitz is a real-life “Wonder” boy, a reference to the book by R.J. Palacio that many Brookfield Middle School students studied in class this year, and which is now a movie starring Jacob Tremblay and Julia Roberts.
Although Seitz has been bullied and made fun of because of his face, he hasn’t shrunk away from people or tried to hide his physical differences. Instead, he has put himself out there, traveling to schools to tell his story. Seitz and his mom, Rose, appeared at Brookfield Thursday during Start With Hello Week, a series of activities in the middle and high schools to promote positivity and kindness.
“Very empowering, and it really makes you realize that some of the obstacles that you face don’t compare to what other people face,” Brookfield junior Hannah Scharba said after seeing Freddie and Rose. “I think it’s going to show people to be more kind and start to realize what types of situations other people are in that they don’t know about.”
Donnie Davis, also a junior, said the presentation “sends a great message to everyone, especially since we have younger kids. The freshmen, they’re new to high schoo,l so it’s great to get them experienced to something like this.”
Goldenhar Syndrome is a rare disorder in which a child does not develop properly in the womb.
“(Freddie) was missing his right ear, his right jawbone, his right cheekbone, he had half a vertebra, his right eye was really small, he was 10 weeks early,” Rose said. Freddie had eating and breathing problems as a child, has sight in only one eye and is deaf. He has undergone more than 30 surgeries.
“None of the surgeries that he has had have been cosmetic,” Rose said. “They’ve all been to help him breathe, eat, sleep, walk. All these surgeries were to help him simply function.”
Function, he has.
Freddie attended a school with a special program for the hearing-impaired in his early schooling, and then entered his home district in Poland starting in fifth-grade.
“Up until this time, Freddie had led a pretty typical life,” Rose said. “In fact, when he was in the third-grade, he had this idea that he wanted to ride dirt bikes. By third-grade, he probably had about 30 surgeries at that time. I was very concerned about having him ride anything remotely resembling a dirt bike. We went to a surgeon, and the surgeon said, ‘Yes, let him do it. If he falls or breaks something, we’ll fix it. Let him be a typical kid.’ So, we all rode dirt bikes.”
Freddie made a lot of friends at school, including one, a popular kid, who “went out of his way to make sure he included Freddie in everything that he did,” Rose said.
“If he saw him, sitting by himself, he went and sat by him,” she said. “When Jeff came over and sat with Freddie, a whole bunch of other kids came over and sat with him. Jeff was a great kid, and he made a huge difference. I think he made a big impact on Freddie and his confidence level. Jeff changed Freddie. There was just that one kid that could change somebody else’s life.”
Brookfield held “No One Eats Alone Day” on Tuesday.
High school wasn’t all smooth sailing. “There were some challenges,” Freddie said through his mom’s sign-language interpretation, including a derogatory post on Facebook from the day in his senior year when he drove his newly purchased Jeep Wrangler to school. A girl questioned why someone like Freddie would be allowed to drive.
Freddie printed out the post, took it to his principal and asked to meet with the girl, which was arranged.
“At first, she was very unapologetic,” Rose said. “She really wasn’t very sorry about it. She started talking about how she had the right to post anything on Facebook and it was her right for free speech. The principal reminded her that, that’s right, she did have free speech, but he also reminded her about how something negative like that can follow you. He (Freddie) printed out the copy of it. The principal told her that he had that copy, and he could easily send this to all the colleges in the state of Ohio. Good luck getting accepted into school after that, right? When he told her that, suddenly she was very sorry. There are consequences to their actions. We really had no intention of doing that. But he just reminded her about that.”
Freddie told the students to look to their friends for support if they experienced something like what he did.
“Also, go to an adult,” he said. “Bring it to the attention of the school. Don’t worry what anybody else is going to think. Make that situation right.”
After high school, Freddie attended the Rochester (N.Y.) Institute of Technology, spending a month in Croatia, and then transferred to the University of Akron, where he graduated with a bachelor’s degree in electrical engineering.
He is looking for a job and, after securing one, plans to marry his girlfriend, Sabrina.
He met Sabrina through the Children’s Craniofacial Association, a nonprofit organization that serves children with facial differences and their families. The CCA’s annual retreats were a regular event for the Seitz family.
“I’m chairman of the CCA alumni and adult committee group,” Freddie said. “We go and we help the younger CCA members, help guide them through the process, because we’ve already done it. We’re a support system for the younger generation following us.”