Port feels pretty well after 2nd surgery

By Denise Dick

denise_dick@vindy.com

Chicago

It’s two surgeries down and at least one to go for Austintown resident Ed Port.

St. Joseph’s Hospital in Chicago moved Port, 41, from intensive care to a regular room Sunday. He said he feels pretty well overall although his throat is sore after nurses removed a feeding tube.

Port suffers from neurofibromatosis, a genetic disease that causes tumors. The tumors covered the majority of the left side of his face, damaging his hearing in his left ear and obstructing the vision in his left eye.

Last week, plastic surgeon Dr. McKay McKinnon operated on Port for the second time, removing smaller tumors and working to reshape some of Port’s features that had been misshaped by the tumors. That surgery lasted about 10 hours.

“He was pretty pleased,” Port said.

Last June, Dr. McKinnon removed the large tumor.

Port expects at least one more surgery.

Two of Port’s aunts, Susanne Dietrich of Ashtabula and Virginia Henery of Dorset, Ohio, also in Ashtabula County, traveled to Chicago to stay with their nephew during and after surgery.

“He’s a trouper, and he’s hanging in there,” Dietrich said. “He’s wanting to get up, I think, a little too soon.”

Though she says Port’s family always has accepted him the way he is, she’s happy that he’s finally getting his long-awaited surgeries.

“To us, Ed was just Ed,” she said. “He’s gone through a lot just to be accepted in society, really. His goal is to have some type of normal life and actually hear out of his ear and see out of his eye. ... Everything is taking shape.”

Port underwent several surgeries as a young boy, but the tumors always returned. Upon reaching adulthood, Port was told by different insurance companies that they wouldn’t cover the needed operations because they were considered cosmetic.

About a year ago, he found a company that, so far, has agreed to cover the procedures.

Port established a website, www.edneedsamiracle.com, and he has more than 2,500 friends on his Facebook social-networking website.

Since The Vindicator began chronicling Port’s ordeal in 2008, several local, regional and national media outlets have begun following his story. MorningStar Entertainment of California filmed Port’s latest surgery as well as some of his daily routine for a documentary planned for The Learning Channel.

“This is a miracle that he’s up here with the support and love of everyone,” Dietrich said. “He’s finally getting something that he’s been yearning for for a lifetime. It’s going to be OK for him.”