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12 News journalist describes living with rare syndrome

The 43-year old Michigan native will undergo a major surgery at the Barrow Neurological Institute's Craniofacial Center that, as Rich points out, will likely eliminate some of his comic material.
Prange has Jackson-Weiss syndrome, which causes abnormalities of the skull. The 43 year-old has become an ambassador for others who have craniofacial abnormalities.

During a recent performance at the Comedy Spot in Scottsdale, Rich Prange delivered a bit about his asymmetrical face and the fact that his right eye brow sits much higher on his forehead than the left brow. Rich described each brow as if they were autonomous characters. There's the straight, solemn brow on the left minding its own business and there's the eccentric, attention-seeking brow on the right.

"He's just out there!" Rich yells to the audience, pointing wildly to the right side of his forehead. "He's just saying, 'Hellooo, look at me!'"

As Rich elaborates on the metaphor, the crowd roars with approval.

Throughout his life, the 12 News photojournalist has learned to use wit and humor to address the unique physical challenges that come with Jackson Weiss syndrome -- a birth abnormality that severely impacts the skull.

"You have to find light in the darkness," Rich said.

The 43-year old Michigan native will undergo a major surgery at the Barrow Neurological Institute's Craniofacial Center. It is a procedure that, as Rich points out, will likely eliminate some of his comic material.

One of the surgeon's three tasks is to re-position Rich's forehead so his eyebrows match up with the orbital rims of the eyes.

"The goal is symmetry," Rich said. "This has been a dream of mine. Now that the opportunity is here, I want to take it."

Rich will enter surgery with the support of dozens of friends, family members and even a few strangers. They all recently contributed to an online GoFundMe account on his behalf.

Rich set up the account with the goal of "raising a few thousand dollars" for the surgery, he said. He planned on funding most of the procedure by dipping into retirement savings. But within 24 hours, he had raised more than $20,000 -- nearly the amount needed for the procedure, which is not covered by insurance.

"That was just awesome," he said.

Rich hopes it will be the last of more than 20 surgeries he's undergone throughout his life. The vast majority were performed when he was a child.

At birth, Rich's skull was fused together where there should have been flexibility for growth. The syndrome caused Rich to have a high pallet, short eye lids, and shallow optical orbits. His mid-face didn't grow. The surgeries were meant to allow for growth. Several involved re-opening his skull to allow his brain to develop.

Along with exhaustive surgeries, Rich dealt with hearing and vision problems. As an elementary school student who wore hearing aids, Rich enjoyed telling curious peers he was listening to the radio. Kids watched with amusement as Rich danced in the cafeteria to imaginary tunes.

"Sometimes I would convince a student he could hear the music too. So he'd start dancing with me," Rich said.

Jackson Weiss Syndrome is one of six syndromes in a family of craniofacial deformities. Some of them include characteristics of mental impairment. But Jackson Weiss is not one of them.

Nonetheless, while growing up, Rich felt he had to constantly prove himself.

"Even as an adult, there is often this feeling from someone else that I'm not up to a task, or I'm not capable," Rich said. One reason he is discussing the his condition publicly is to help parents of other children with craniolfacial abnormalities know there is hope.

"There is a possibility your kid can do very well," said Rich, who graduated from Central Michigan University with a degree in broadcast journalism.

Rich credits his parents' refusal to give him a break as one reason he has been successful.

"They treated me with an iron fist," he said.

Rich also says his parents helped him survive the "dark days" of high school when he contemplated suicide. Childhood friends abandoned him. Fellow students didn't want to associate with him on campus.

Rich routinely envisioned himself jumping off a second-story balcony at his school.

"The only thing that kept me from doing it was I didn't want to survive. I didn't want to try to commit suicide and survive. And the other thing which was probably the strongest was my parents. Not to disappoint my parents," Rich said.

Along with his family's support, Rich says his family's two dogs helped him cope with the trauma of feeling like an outcast.

"If I was home alone or feeling sad, my two dogs would be, like boom! right there," he said. "They always sensed if something was wrong. To this day I love dogs. Dogs are just, they're good people."

Unlike Rich's previous surgeries, this one is considered cosmetic. The surgeon performing the procedure is Dr. Stephen Beals, who often operates on soldiers returning from combat suffering from facial fractures and wounds.

Beals says some details of the surgery largely depend on what he encounters during the procedure itself.

"What's challenging is there is a lot of scar tissue on his skeletal framework. It's asymmetrical, bumpy and it complicates surgery," Beals said.

In addition to creating facial symmetry, Beals plans to add volume in Rich's upper eyelid on the right side, where Rich is deficient in tissue below his skin. He will also go inside Rich's mouth underneath his upper lip and insert cheek implants in order to give volume to areas of Rich's face that never fully developed.

Rich is more than just a patient at the Cleft and Craniofacial Center at Barrow Neurological Institute. Recently, he held a fundraiser at the Comedy Spot to support financially-strapped families affiliated with the clinic.

Rich presented a check for $750 to the hospital. It was the fulfillment of a goal he has had since he was a teen. He wanted to give back to the craniolfacial medical community that helped him during his youth.

"He's really beaten the odds with his attitude, his determination and his self-confidence. He's a role model for other kids and our patients," Beals said.

Rich says although he's confident the procedure will go well, he is keeping his expectations low.

"I'm actually interested to see how the surgery impacts my life," he said. "As a journalist, I want to know what changes I notice in other people and myself. Maybe I will realize I was paranoid about some things. Maybe it will still be hard for me to get a date."

What will likely not change is Rich's dry wit, which he occasionally brings to the workplace as well.

While working one day recently, Rich sent a mass email to the newsroom staff titled "I can't hear out of my right side today." The email had one line: "Please plan accordingly."

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