Art event will help Ed Port

By DENISE DICK

denise_dick@vindy.com

AUSTINTOWN

It’s been more than two years since Ed Port went under the knife to remove large tumors that obscured the left side of his head and face.

His hearing and vision on the left side have worsened, he still suffers from headaches, and he still needs at least three more surgeries. He’s already had five.

And he’s about $40,000 in debt.

“My immune system has been down,” Port, 45, of Austintown said. “I seem to be more susceptible to colds and the flu.”

He’s maintained a booth at the Canfield Fair for the last few years, trying to raise money by selling soaps and lotions that he makes and wild game jerky he buys from another company.

He hasn’t had a major fund raiser in more than a year.

“A lot of people seem to think that TLC or the production company paid for my surgery,” Port said.

They didn’t.

Port was born with Neurofibromatosis, a rare, genetic condition that causes large tumors. He was featured during his second surgery in the TLC program, “My Giant Face Tumor,” but he wasn’t compensated for it.

The company only paid for three nights in a hotel for Port’s two aunts who accompanied him to the Chicago hospital where Dr. McKay McKinnon operated on him.

Port will get a portion of the proceeds from the Intoxipainted event at 4 p.m. Sunday at Suzie’s Dogs and Drafts, North Phelps Street, Youngstown. The cost is $30 and Port will get $10 of that from each attendee.

Artist Christie Galazia of Youngstown will lead participants as they paint and drink beers and wines available at Suzie’s.

Seating is limited and reservations are required by stopping at Suzie’s or emailing the artist at crgalazia@gmail.com.

“I decided I wanted to help Ed as soon as I met him,” Galazia said in an email. “He seemed like a nice guy just trying to make some extra money to pay his medical bills. Luckily, the managers at Suzie’s Dogs & Drafts are great people and have been kind enough to let me host monthly painting classes there. I decided to use that opportunity as a way to raise awareness for charities and to help local people in need. No one chooses the situations they’re born into and I feel like it’s up to the rest of us to help out the best we can. People should be helping people. Period.”

Port also will sell some of his homemade soaps and lotions at the event.

Port was born with the condition and had many surgeries as a child. Once he grew up, he had a hard time finding a health insurance company that would cover him and he could afford.

He secured a plan a few years ago when the largest tumor began to press on his eye. The tumor eroded his cheek and jawbones and pitted his skull cap.

Port was in danger of a stroke.

While he has health insurance now, it’s limited and doesn’t provide coverage for general doctor visits or prescriptions.

One of the surgeries left him with an opening behind his ear that took about a year to heal. It kept getting infected, necessitating doctor and hospital visits.

He learned at a recent appointment with an ear, nose and throat specialist at the Cleveland Clinic that the ear didn’t heal properly. It will take another surgery to fix.

More tumors on his cheek, neck, back, chest, hand and arm have cropped up in the last several months. They may continue to grow.

Despite the problems, Port doesn’t regret the surgeries he’s had.

“I’m alive,” he said.