Positive things keep happening for Ed Port

By Denise Dick



Ed Port realizes little miracles every day.

Less than two months after undergoing a fourth surgery to remove tumors from his face and body caused by the tumor-causing genetic disorder neurofibromatosis, Port, 42, bought a small house.

The rent at his apartment was due to rise again, and he found the Mahoning Avenue house, made a down payment from a small investment fund and reduced his monthly payments.

“He’s doing really good,” said Port’s aunt, Susanne Dietrich of Ashtabula. “Now he’s moved out of that apartment where he lived for all of those years, and he bought a house, and it’s all positive.”

Port returns to Chicago next week for an appointment with Dr. McKay McKinnon, the plastic surgeon who performed his operations, and they’ll discuss details about a fifth surgery expected this summer.

“I’m feeling pretty good,” Port said.

In last November’s surgery, Dr. McKinnon implanted a titanium plate in Port’s left cheekbone to make it more uniform with the right side. The doctor used a couple of small pieces from the back of Port’s skull to push his left eye out and hold it up.

Portions of Port’s left cheekbone and orbital bone were eroded by the large tumors that covered that part of his face.

Some swelling remains, but his features are more uniform now. After an earlier surgery, Port’s vision deteriorated.

The Austintown Lions Club provided him with a pair of eyeglasses to correct his sight, Port said. He still struggles with vision in his left eye, which had been obscured by the tumors.

Some community organizations have expressed interest in sponsoring fundraisers for him although nothing has been finalized.

After years of being turned down for medical coverage by insurance companies who told him his condition was cosmetic, Port found a company that agreed to cover a portion of his medical expenses. He still must pay for the remainder.

He established a website, www.edneedsamiracle.com, as a way to raise funds several years ago. He now has thousands of Facebook followers from all over the world.

For his fifth surgery, the doctor is thinking about a nerve transplant to restore the movement deadened by years of tumor growth.

The surgeon would take a nerve from Port’s leg and transplant it in his face, attaching the right and left corners of his mouth.

“So when I smile, both sides will come up,” Port said.

Right now, only the right corner of his mouth goes up, giving him a lopsided grin.

Port’s enjoying his new look. Gone are the stares and the glances followed by diverted eyes that used to follow him.

“Sometimes I look in the mirror and have to tell myself, ‘Yeah, it’s still me,’” he said.

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