Sunday, October 18, 2009
His life-changing surgeries are closer to reality.
By DENISE DICK
VINDICATOR STAFF WRITER
An Austintown township
man with a rare disorder that causes severe facial tumors is getting national attention.
Ed Port, 39, who suffers from Neurofibromatosis Type 2, was contacted a few months ago by a Los Angeles production company that’s interested in featuring him.
“They want to do a program on my story,” Port said.
Tumors caused by the disease obscure one side of his face, affecting his sight and hearing on his left side. Between ages 7 and 19, he underwent several surgeries, but the tumors returned. Since adulthood, health insurance companies have refused to cover the series of surgeries he needs to correct the problems, calling the surgeries cosmetic.
Erin Germain of MorningStar Entertainment said she learned of Port’s dilemma through a Vindicator article she read while researching on the Internet.
“MorningStar Entertainment, which specializes in health-related programs, will be filming Ed’s story with plans to place it on a national television show,” she said.
The production company hopes that the exposure of Ed’s story will help move him closer to his goal, Germain said.
The company is the producer of “Surviving A Super Tumor,” which is scheduled to air tonight on TLC. The time frame for filming depends on when Port’s surgery is scheduled.
“I was in disbelief,” Port said.
He had pitched his plight to several networks and talk shows a few years ago and never received a response.
Port recognizes that the potential the surgeries have to change his life.
“I wonder if people will recognize who I am,” he said.
He also hopes it changes his prospects for employment. In the past, Port has been turned away when he’s shown up for job interviews. While the interviewer never said it, Port suspects his appearance was the reason.
Correction of his tumors is expected to take at least two surgeries and cost thousands of dollars.
Port met last month with a Chicago surgeon and plans a trip to Dallas to meet another soon.
While the national program will provide exposure, Port still needs to raise money to pay for the surgery. He’s raised about $30,000 so far. He received a discounted rate for the Chicago hotel room because of the nature of his trip.
“The Children’s Cranial Foundation paid for the plane ticket,” Port said.
A spaghetti dinner fundraiser is set for 11 a.m. to 6 p.m. Oct. 25 at St. Dominic’s Parish Center, Southern Boulevard, Youngstown.
At a fundraiser last week at Buffalo Wild Wings, Austintown, 15 percent of food sales purchased with a special coupon went to Port’s fund.
Brent Furrie of Austintown and Tina Ryder of Sharon, Pa., were among those who attended.
Furrie, the owner of Rumors, a Meridian Road bar, met Port at Denny’s restaurant.
“I watched him come in and go sit in the back,” Furrie said.
He asked one of the restaurant’s employees about Port, and the employee told him that Port sat in the back to avoid people saying rude things to him, Furrie said.
Furrie’s brother is mentally disabled and he’s seen the way some people have treated him.
“I don’t judge people,” Furrie said. “When you belittle people that’s when I judge. That’s the way I grew up, the way I was raised and the way I am today.”
He took some of Port’s fund-raising items — candy bars, raffle tickets — to sell at his bar.
Ryder, a student at the Art Institute of Pittsburgh, learned of Port and his story on Facebook.
“I just stumbled on it, and it intrigued me,” Ryder said.
She decided to take a photograph of Port for her news photography class.
But she also wants to raise awareness of his story beyond the Mahoning Valley. She grabbed a handful of fliers, telling Port’s tale, and planned to distribute them to classmates.