Muir Library librarian Heidi Schutt (far left) and a group of children welcomed special guest Steve Bensen (orange shirt).

Inquisitive youngsters, and adults, traveled to the Muir Library in Winnebago on April 24, the Elmore Public Library on April 25 and the Blue Earth Community Library on April 26 to welcome guest speaker Steve Bensen.

As part of the BEA Reads program, Bensen, who also visited Blue Earth Elementary School, led a group discussion at area libraries regarding Treacher Collins Syndrome, an hereditary birth defect which he was diagnosed with. Although Bensen’s mother and father were not inflicted with the illness, the gene which causes Treacher Collins was passed onto him.

Bensen shared the story of how he and his family have been impacted by the disease. The book “Wonder,” featured in the BEA Reads program, has a main character, Auggie Pullman, who also lives with Treacher Collins Syndrome.

The medical condition, also referred to as mandibulofacial dysostosis, creates underdeveloped cheek and jawbones. Notching or stretched lower eyelids, as well as abnormalities to the outer ear are also symptoms of the disease.

Bensen revealed he experienced a host of medical complications associated with his condition. For example, deformities to his external ears led to Bensen electing to be fitted for prosthetic ones. He estimates there has been at least 10 surgeries throughout the course of his life.

The South Dakota native also had to be hospitalized an entire year after he was born. Because of his frequent hospital visits, Bensen says he is extremely grateful for the quality medical care he has received.

“I wish it was possible to say thank you to all the nurses that have taken care of me over the years,” Bensen says. “I have a great deal of respect for the work they do on a regular basis.”

Not only did Bensen have various medical issues because of Treacher Collins, but his outward appearance also created difficult social situations at school. Bensen credits his older brother Kevin for protecting him when children would act cruel towards him.

“He was always there for me, I had such a great support team around me,” Bensen says. “Mom and Dad as well, they would go to bat for me any day of the week.”

Despite the struggles of his condition, Bensen’s self-deprecating humor allows him to keep a positive state of mind. He shared the antidote of an embarrassing office situation involving his prosthetic ears.

“I sneezed so hard my ears popped off,” Bensen laughed. “Then they were rolling around on the floor and I had to go find them. Don’t you hate it when that happens?”

By openly sharing his life experiences with Treacher Collins Syndrome, Bensen stresses the importance of being kind to others who may be struggling with a disability.

“If you see somebody that may look a little different, don’t just stare, say hi to them. Something as simple as that can make a world of difference,” Bensen says.

Now 38 years old, Bensen is a quality assurance analyst for Wells Fargo Home Mortgage in Minneapolis and has worked for the company for the past 10 years. Bensen’s connection to the area is through his wife, Casey, who happens to be a 2002 graduate of Blue Earth Area High School.

Bensen also revealed he and his wife were exploring the possibility of having children of their own. However, after having genetic testing done, it was discovered there is a 50 percent chance of Bensen passing Treacher Collins onto his child. As a result, the couple decided foster care would be a better alternative.

“That’s not a chance I’m willing to take, 50 percent is like a coin flip,” Bensen explains. “I had awesome parents and an awesome childhood, but I know how daunting it can be living with this condition, so why not give somebody else a good home.”