Tumor Devours Utah Man's Face, But Not Spirit

Photo: Tumor Devours Utah Mans Face, But Not Spirit: Film Follows Maurice Simpson Who Fights Ever Growing Tumors That Took One Eye

When Maurice Simpson was only 6 weeks old, his mother noticed his eye was slightly puffy. By the time he was 5, fleshly lumps grew so large that they obscured his eye.

"Right away I got him to the doctor and they didn't know what it was," said his mother, Brenda Simpson of Flint, Mich. "He eyelid was totally closed and it started going into his jaw."

Over the years, the tumors -- elongated tubular lesions that hang from his eye socket and nose -- grew so large that they engulfed the right side of her son's face.

Video: Clip from A Brand New Face.
Clip from the documentary "A Brand New Face"

Maurice was diagnosed with neurofibromatosis, a genetic condition that has devoured his face, but hasn't stopped him from living life to the fullest.

"I am probably the best looking man in the world," said Maurice Simpson, now 34, and the subject of a documentary, "A Brand New Face," by Darlow Smithson Production Company, which aired Sunday night on TLC. "My parents taught me to be happy with who I am."

Simpson agreed to participate in the documentary to help others.

He let British filmmakers follow him through his daily life, at work as a manager at the fast food chain Arby's and at his home with his wife and five children in Ogden, Utah.

The crew also followed Simpson through life-threatening surgery to remove his eye and reconstruct his skull after the tumor -- untouched for 17 years -- had put pressure on his brain.

All Simpson wanted to do was to get the growth removed so he could fit a helmet on his head to ride his motorcycle.

An anonymous donor, a businessman whom Simpson had met while working a part-time job delivering pizza, offered to pay the $3,000 deductible to make surgery possible.

After a 13-hour operation in January and a 5-hour procedure in June, Simpson is exuberantly pursuing his life, coaching both his son's football team and his daughter's basketball team with a sense of humor that is contagious.

"Why can't you get that shot? You have two eyes," he tells his basketball players.

"Maurice walks up to people and is friendly and outgoing, once you get past the face," said his mother, who is 55 and still lives in Michigan. "You spend two minutes with him and you are laughing."

An estimated 100,000 Americans have neurofibromatosis, a disorder that occurs in both sexes and in all races and ethnic groups, according to the Children's Tumor Foundation (CTF), which supports much of the research.

There are three distinct forms of the disorder -- each causes tumors to grow on nerves throughout the body. Most tumors are benign, but some can become cancerous. It is more prevalent than cystic fibrosis, Duchenne muscular dystrophy and Huntington's disease combined.

Simpson has the most common form of NF type 1, also known as von Recklingshaus disease, which affects about 1 in 3,300 children, according to Dr. John G. Golfinos, associate professor of neurosurgery and otolaryngology and chair of the Department of Neurosurgery at New York University's Langone Medical Center.

"The disease shows up on the skin and causes tumor formation in the nerves," he said. "They are part and parcel of the nerve and end up taking them out when they get really big or really painful. They get hundreds and it's impossible to take them all out. Every one you take sacrifices a nerve."

A Century Ago, Those with NF Were Shunned

To diagnose NF, pediatricians look for characteristic skin lesions and big birth marks known as "cafe au lait" spots.

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