Tumor Devours Utah Man's Face, But Not Spirit


"The sad thing is that 100 years ago, people like [Simpson] showed up in the circus side shows like the Elephant Man," said Golfinos. "But it's extremely helpful to have a documentary like this to help others."

Scientists now know that John Merrick, the 19th Century Englishman who billed himself as the "Elephant Man," did not have NF1, but a similar disorder, Proteus syndrome.

Merrick suffered social ostracism and ridicule.

"Today the world is a more enlightened place and more welcoming of those with disabilities," said Golfinos.

Maurice Simpson, who not only has a facial tumor, but fatty tissue on his legs, arms and back, got plenty of support from a young age.

"His dad encouraged him," said Brenda Simpson. "This is life and the hand he was dealt and he was going to have to get through it and learn people were going to be cruel, but we love you. God made you this way for a reason."

"When he was young, we wouldn't allow him to lock himself up in the house or turn his face away," she said. "We let him know, he can't hide."

The boy's biggest mentor was his older brother by two years, Alan, who was murdered when Simpson was only 9.

"It shook Maurice's world," said his mother. "It was rough, but he continued to work harder because he didn't want Alan to be disappointed in him."

Every other year until he was 15, Simpson had painful surgery on his face -- seven operations in all. "He was so disappointed, he threw the mirror down and said, no more," said Brenda Simpson.

Her son said he wanted to live his life, and he did, first marrying Tara Williams and having two children, Shayla, 13, and Christopher Rashawn, 11, then, after a divorce, finding the love of his life, Charity, a supervisor at a food shop.

They married in 2002 and had Maurice Jr., 6, and Jaylen, 3. Andre, 5 months, was born right after Simpson's last successful surgery.

"The first time I saw him I was a little shocked by his face," Charity, 30, told British film makers. "But Maurice was so confident and flirtatious, he really shone. I thought he was very attractive. Maurice is so funny and charming, everybody wants to be near him."

But after ignoring the tumors for 17 years, they eventually grew back. The right side of Simpson's face was as large as a basketball, dislocating his ears and invading his eye socket.

When a local businessman offered his help, Simpson underwent surgery in January at Utah's Huntsman Cancer Center. What surgeons found was life-threatening: Colossal tumors were breaking apart his skull.

In June, he had a second operation to remove a half-pound of sagging skin on his face and reposition his drooping mouth.

Now television reality shows are courting Maurice, who hopes the publicity surrounding his condition will help others with their self-esteem.

"Hats off to him," said John Risner, president of the Children's Tumor Foundation (CTF), whose 21-year-old son has NF1. "We need some awareness. We are only starting to gather attention."

NF is primarily a genetic disorder that can be passed on by either parent. But in about half the cases, there is no family history, but a genetic mutation.

It is the largest genetic disorder that stems from a single gene -- chromosome 17.

The disorder is also highly variable, according to Risner. Unlike Simpson, some show no outward physical signs. Others, like his son, have only small skin lesions. About 55 to 60 percent will have accompanying learning disabilities.

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