Miracle in motion for Ed Port
By Denise Dick
austintowN
Fulfillment of Ed Port’s long-awaited miracle starts today.
Ed Port
Ed Port of Austintown who suffers from a rare condition called type 2 neurofibromatosis will undergo a series of corrective surgeries.
The township man with a tumor that covers the left side of his face is scheduled to undergo the first of at least three surgeries Wednesday at St. Joseph Hospital in Chicago. The tumor is caused by neurofibromatosis type 2, a genetic condition.
Port, 41, flies alone today to Chicago where he will meet Monday with Dr. McKay McKinnon, a renowned plastic surgeon.
“Can I say it’s surreal?” said the soft-spoken man, sitting in his apartment last week with his cat, Spike, on his lap.
The 12-hour procedure is the first of at least three surgeries Port must undergo.
It will be life-changing.
“The doctor said that after the first surgery, people that know me won’t even recognize me,” Port said.
That will be the most difficult part.
But this is something he’s hoped for since he was a child: to look like everyone else.
Growing up posed challenges with almost daily taunts and name-calling from other children. As he aged, the problems centered more on his employment prospects. During phone interviews, potential employers sounded encouraging only to say he wasn’t right for the position when he showed up in person.
Port has a degree in business management but works in telemarketing at an area call center.
He was diagnosed with the condition as a child, and between the ages of 7 and 19 underwent about 20 surgeries. The tumors always returned.
In adulthood, Port tried to secure health insurance so he could get the surgeries and have a more normal life. He heard from several companies, though, that they wouldn’t cover the procedures he needed because they were considered cosmetic.
“I believe Mr. Port has been mistreated by insurance companies in the past who have said the surgery is cosmetic,” Dr. McKinnon said.
That’s unbelievable, he said.
The surgeon, who has operated on several other patients with the disease, said Port is in the top-10 percentile in devastation of his appearance.
His condition is far from cosmetic, he said. While Port’s left eye is functional, it’s virtually useless because the tumor blocks his field of vision. Port sees only slivers of light.
His hearing in his left ear is diminished too.
About a year ago, Port found an insurance company to cover him, and at least for now, it’s agreed to pay for 80 percent of the cost of the several-hundred-thousand-dollar surgeries. However, the company won’t provide that guarantee in writing, and Port says it has two years to appeal and opt not to pay.
“We’ll remove as much of his tumor as possible and try to produce a permanent result,” Dr. McKinnon said. “We’ll reconstruct the bone deformity.”
The tumor has destroyed part of both Port’s left orbital bone (the socket in the skull where the eye is located) and left cheekbone.
Dr. McKinnon’s plans to replace those bones in the first surgery.
He’ll separate the orbital bone from the brain using Port’s own bone and a piece of titanium.
Without surgery, the tumor will keep growing. It could affect Port’s ability to eat, to speak.
It likely will take six to eight weeks for swelling to decrease, after which Port can think about scheduling the next surgery, when Dr. McKinnon plans more reconstruction.
Even with insurance, his portion of the medical bills won’t be cheap. He won’t know exact costs until he gets the bills.
A fundraiser raffle is set for July 30 at Buffalo Wild Wings in the Austintown Plaza. Port expects other events to raise money too.
He’s grateful for the fundraisers groups have organized for him in the past.
He looks forward to the changes he’s about to experience but is anxious about such a long surgery.
“When I was 7, I had an 11-hour surgery and I almost didn’t make it,” Port said. “When I was 8, I had a 10-hour surgery and I almost didn’t make it.”
Both times it was because of the loss of blood.
“But I have full confidence in Dr. McKinnon,” he said. “I have no question that he’s the best person to do my surgery.”
Port researched several doctors in his quest for the right one. Besides meetings with Dr. McKinnon, he traveled to Dallas and Seattle and met with plastic surgeons there.
He knew the Chicago surgeon was the right choice last February when he received an after-hours call from him.
“He said, ‘Mr. Port, I want to help you. I’m willing to take this as far as you’re willing to take it,’” Port said.
He takes assurance knowing that Dr. McKinnon has removed tumors in other neurofibromatosis patients.
Port, with the help of friends, established his “Ed Needs A Miracle” website a few years ago, www.edneedsamiracle.com, to try to raise funds for the surgeries and awareness about the disease.
He always believed his miracle would come.
“Sometimes I’d ask why it had to take so long,” he said. “But now I think I know why it had to take so long.”
After media coverage, including several Vindicator stories, started about two years ago, Port began hearing from others in person and via email, telling him how he’s touched their lives.
Not long ago, Port was sitting in an area restaurant when a stranger approached him.
“He said, ‘Ed you don’t know me, but I know you. Our whole group knows you, and we talk about you.’ It was a cancer group,” he said. “He said that if I could go through all of the surgeries that I’ve been through, that he knew he could beat cancer. He said that I was an inspiration to him.”
Similar sentiments came from all over the country, parts of Canada, Poland and Peru.
He has a strong faith in God, believes everyone was put on earth to serve a purpose and thinks his is to provide that encouragement to others.
He wants to continue to do that in some way after his surgeries.
“I’m looking forward to what the future is going to bring,” he said.