James O'Neal is such a die-hard fan of the Seattle Seahawks football team that he has a tattoo dedicated to the team inked on each arm. But the tattoos are his least defining physical characteristics.
O'Neal, 46, has neurofibromatosis, a genetic disorder that causes benign tumors to grow on his nerve cells. These tumors can appear anywhere on the body, but O'Neal's are concentrated in a mass on the left side of his face.
While some might choose to keep themselves out of the limelight, O'Neal is a busy supervisor at a local supermarket where he lives in Woodinville, Wash. He is also an avid golfer. The unabashed way in which he goes about his life and work, interacting with customers and friends, has earned O'Neal the admiration of the community. And lately, they have been actively returning the love.
Last fall, a church group headed by one of O'Neal's long-time customers at the Safeway supermarket began a campaign to see if anyone would be willing to help him seek treatment for his condition.
O'Neal, who used to undergo surgeries every summer until he was 18 to remove growing tumors, would need several thousand dollars worth of surgery to remove the massive tumors that now cover his face.
Neurofibromas are fairly rare and occur in one of about 100,000 Americans, according to the National Institute of Neurological Disorders and Stroke.
"I was always interested in his story. He really impressed me," Knopf said. "Only a few people came to the first meeting, but everyone gave money, and we got $60 that day."
It Takes a Village
Since then, O'Neal's story has been picked up by the local news, and the community has rallied around him. An official fundraising drive commenced in May 2008, and the total number of donations has exceeded $135,000.
"I'm hardly doing anything now," said Katie Knopf, the 39-year-old homemaker living in Bothell, Wash., who helped launch the drive. "It's all these other people who are still motivated to help him."
O'Neal has taken the events of the past year in stride although he sometimes can't believe how strongly the local, and global, community came together to help him. Donations for O'Neal include $10,000 from his employer, Safeway,and $600 from a local sixth- grade class.
"I've never had that kind of support before," O'Neal said. "I'm overwhelmed. I didn't think it would be this quick."
O'Neal has also received donations of various services, some from people he has never met.
Richard Holstein, owner of Courierwest, a courier service in western Washington, learned about O'Neal through a friend and offered to transport any medical records or specimens O'Neal's surgeon might need in preparation for O'Neal's operation.
"For me, you look at the guy, and he's just out there working," Holstein said. "He's got a great attitude. How can you not just join up with this guy?"
Dr. Peter Neligan, director of the Center for Reconstructive Surgery at the University of Washington Medical Center has joined with O'Neal in a big way and will perform the surgery to remove O'Neal's tumors, gratis.
"He's a very striking individual," Neligan said. "The least I can do is join in to the community effort and donate my services. ... He's quite pumped about the idea of having surgery."
Although there are records of people receiving full-face transplants, O'Neal has opted for a less radical operation to "debulk" his tumors, which removes most of the tissue but leaves some behind.
But it is far from a simple procedure. The first of two operations will take about 10 hours, with Neligan preserving as best he can the form and function of the nose, mouth, ears and O'Neal's remaining eye. The tumors have alread cost him the use of his left eye. Even after two operations, O'Neal will need further surgery in about three years to keep tumor growth at bay.
Dr. Neligan said the result may not look 100 percent normal, but that there would be a significant improvement in O'Neal's appearance.
Though O'Neal is looking forward to the procedure, he is not concerned that the alterations will be more than skin deep.
"It's hard to say. ... I'm not looking for anything different," O'Neal said. "Someday, I hope to be store manager. ... I think I inspire a lot of people just being out working."
O'Neal will be out of commission for about six weeks following his surgery. But, as a practical football fan, O'Neal has scheduled the procedure for November so he can watch Seahawk games on television while he convalesces.
To learn more about O'Neal's story or to donate toward his surgery, visit http://friendsofjamesoneal.blogspot.com/.