"Guardian angel" leads fundraising to help disfigured Eastside man get treatment

Katie Knopf didn't need Oprah Winfrey.

She first noticed James O'Neal working his cash register at the Kingsgate Safeway four years ago. Nervously, she approached him one day and asked what disease affected him.

O'Neal, 46, suffers from neurofibromatosis. It's a genetic condition that, since birth, has distorted the left side of his face so that it swells with large tumors, and smaller bumps appear over his body.

Growing up in Duvall, O'Neal had surgery to remove the tumors every summer, from the ages of 1 to 18. He hasn't been able to afford the procedures since then.

O'Neal told Knopf all this in the checkout line. The 39-year-old mother of five became determined to help him. A full-scale community effort followed, collecting more than $100,000 in less than a year to pay O'Neal's medical bills.

Knopf had not expected such support. Initially, she filmed a video of O'Neal for a class project of her daughter's. She figured sending out the video would bring attention to O'Neal — and possibly help from television talk-show host Oprah Winfrey and her millions.

But last fall she came up with a new plan.

"It finally hit me that I didn't want Oprah to swoop in and save the day," said Knopf, of Bothell. "I wanted it to be this community because he means so much."

What started as a hope for outside attention became a fundraising juggernaut. Knopf's efforts have generated more than $110,000 for O'Neal, more than twice her original goal.

No fear

He looks forward to shedding his tumors, but his condition has never scared him away from a public life. He attended school in Duvall, where he said most kids were accepting.

His parents, O'Neal said, told him to be who he was.

"I've always done whatever I wanted, no matter what," said O'Neal, who now lives in Woodinville. "That's just the way I felt. Everybody's born different whether it shows or it doesn't show."

After high school, O'Neal worked construction with his dad. Before working at Safeway he had a job at a software-packaging company and volunteered a couple of years with a company that built race cars.

Last week, O'Neal saw a doctor and was cleared for the eight-hour surgery to remove the tumors he has dealt with for 28 years.

Neurofibromatosis causes tumors to grow around nerves in the body. There are two main forms of the disease.

The form O'Neal has, NF1, affects one in 3,000 or 4,000 people, according to the National Institute of Neurological Disorders and Stroke. Epilepsy, heart problems and learning disabilities are more common in individuals with NF1. Scoliosis and other bone deformities also can be symptoms.

The rarer form of the disease, NF2, affects one in 40,000 people. NF2 can cause hearing loss, nerve damage and brain tumors.

Facial repairs

The first surgery O'Neal will undergo in November will remove most of the tumors and reconstruct the left side of his face, which has been stretched and pulled down by the weight of the tumors, said Dr. Peter Neligan of the University of Washington Medical Center.

After four to six weeks of recovery, O'Neal will return to doctors for operations to remove more of the tumors and further reconstruct his face.

The tumors, however, will continue growing slowly after the "debulking" surgery. Neligan said O'Neal probably will need surgery every two or three years.

Neligan is also donating to O'Neal — not with money but with time. He won't charge O'Neal the doctor's fee (typically $5,000 to $10,000) for the surgery — something O'Neal didn't learn until Tuesday.

"Everybody has done so much to help this guy — and he's such a great guy — that this is going to be my gift to him," Neligan said.

There will be drug and hospital costs, but O'Neal hopes the money raised will be enough to cover all his expenses and compensate for the time he misses work.

She kept her word

In the seven years O'Neal has worked at Safeway, he recalls six or seven people offering to raise money for him. No one did. Until Knopf. O'Neal didn't want to get his hopes up when she approached him, but she seemed like a person who followed through on her word.

"Katie's like, I don't know, like a guardian angel," O'Neal said. "I knew right away she was going to have it happen."

Knopf started by sending her kids out with fliers about O'Neal. They didn't ask for any donations but her children returned with money from everyone they spoke to.

She started a Web site in March and a local TV station picked up the story in May. Donations flowed. On one day alone, the total jumped by $25,000, and money has come from as far as Australia, New Zealand and Belgium.

The news exposure has turned O'Neal into something of a celebrity in Kirkland and Woodinville.

As O'Neal talked with a reporter recently at an office at Safeway, a co-worker walked in.

"Hello, rock star," she said.

"Rock star or Mr. Hollywood, whatever works for you," O'Neal said.

O'Neal is comfortable with the exposure. Customers and co-workers see an inspiring story in him.

"It's been kind of uplifting," said Andy Riutta, who works at the Starbucks at the Kingsgate Safeway. "It's a massive group goal, and it's been really cool seeing everybody work together."

O'Neal didn't expect such an outpouring of support either, at least not as quickly as it has come.

"It makes me feel that I'm loved by everybody, that everybody cares, especially this community," O'Neal said.

Sean Rose: 206-464-2292 or srose@seattletimes.com