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The Atlanta Journal-Constitution
Published on: 03/11/07
His clothes cover his scars and his tumors, just like his smile screens his pain.
Drew Leathers has had almost half as many major surgeries (nine) as birthdays (19). His daily life is a constant battle against the pain and threat of paralysis that comes with his case of Schwannomatosis, a rare, essentially untreatable neurological condition in which noncancerous tumors attached to nerve cells grow like unseen, defiant weeds in his legs, back, abdomen, brain and lung areas.
NICK ARROYO | |||
| At sundown, (l to r) Jeremy Abraham practicing with Drew Leathers coaching the school's Lacrosse club at Bobcat Village at Georgia College & State University. (all cq) (NICK ARROYO/STAFF PHOTO) | |||
NICK ARROYO | |||
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About the only things doctors can do for Leathers, a 2006 graduate of Parkview High School in Lilburn, is give him medications to ease the symptoms, monitor the growth of the tumors, and cut them out when they grow too large.
But his cause isn't too heavy for his brothers.
Chad and Ben Leathers, both students at the University of Georgia, became active in fund-raising efforts for research to help Drew and others like him. They've formed a triathlon team called the "Tumornators" to participate in charity events. Ben has written a song about his brother and Chad has used the music in a video called "Hope," which he's posted on a Web site used for fund-raising.
The young men's mother, Fran Cone, sells "Tumornator" T-shirts at the school where she teaches, Arcado Elementary in Lilburn.
Drew's battle for a normal life is fought mostly out of everyone else's sight.
Unless Drew wears shorts or takes off his shirt, nothing shows. No one who doesn't know his medical history could tell that Drew is anything other than what he appears to be: a tall, handsome, athlete. And even those who do know tend to think first of the healthy things about him, such as the "24-karat smile" that his former Parkview principal, Charles "Buck" Buchanan, still recalls.
Which is just the way Drew wants it.
"I never really wanted to gain attention for my tumors," he said. The pain comes "not day by day, but hour by hour," he said, adding, "My back is pretty much always in pain, but I try to put a smile on my face like nothing's happening." The hardest thing to deal with, he said, is "the lack of knowing when it will end."
The first sign of the disease was a tumor on his leg that became visible when Drew was in the fifth grade. His older brothers, Chad, now 22, and Ben, now 21, would punch it when they roughhoused. That tumor was cut out, but others took its place.
About three years later, Drew was diagnosed with Schwannomatosis. It is the rarest form of a group of diseases called neurofibromatosis. Typically, the tumors associated with the disease become apparent during childhood or early adolescence. Often, the tumors are cancerous.
The tumors didn't stop Drew from playing football and joining the wrestling team in his first years at Parkview. He tried to tough it out, but the disease was tougher.
"I'd do a blocking drill and have to collapse to my knees from the pain," Drew said.
He was able to play lacrosse for a time, but the contact in that sport became too much as well.
Drew refused to give up or give in. He became the videographer for the football team. He went on foreign missions for his church, Mountain Park United Methodist Church. He also served as a class officer for his last three years in high school.
Still, there were tough moments. Even though he was named "King of the Prom," the event was marred. He had been confined to his bed post-surgery for a month prior to the prom. He recalls that night as being tinged with the melancholy realization that many of his dreams would have to be canceled. "I had all these plans for my life, then all of a sudden ... " he said.
Whenever he gets low, however, he turns to what he calls "the best family ever."
Chad and Ben Leathers have made it their cause to help raise research funds for the disease that afflicts their brother. Besides starting the "Tumornators," they run in charity races to benefit the Children's Tumor Foundation, which supports research into the neurofibromatosis diseases.
"We all need to do something," Chad said. "We can't just wait for a miracle cure."
Ben is helping to arrange a benefit concert, planned for this spring in Athens. He said his brother's pain has affected his own outlook.
"My little complaints are nothing now," Ben said.
The Leathers brothers' cousins, professional football players and Parkview grads Jon and Matt Stinchcomb, have also joined the family crusade, making the Children's Tumor Foundation one of the primary beneficiaries of their foundation's charity events.
Buchanan, Parkview's principal, said the school will hold similar fund-raising events during the rest of the school year to benefit Drew and others with the same illness.
When Drew was at Parkview, he was a "great positive leader," Buchanan said.
"Even when he had bouts when I knew he was hurting, he'd always bounce back," Buchanan said.
Dr. Anna Janss, Drew's physician and director of Neuro-Oncology Program at the AFLAC Cancer Center at Egleston Hospital, said reasearch is the best hope.
"There's no textbook for the care of his disease," she said.
Although Drew can expect a long life, it will likely be one filled with physical pain, and because he has a pre-existing condition, he may find it difficult to obtain health-care coverage for the expensive imaging and surgeries he will need. In some areas of Drew's body, the tumors are almost impossible to remove, because of how they are attached to his organs or important nerve groups, she said.
Drew is now willing himself to have as normal a college life as possible. He has made it through his freshman year at Georgia College & State University at Milledgeville, telling hardly anyone about his condition.
"Dude, it's tough," Drew said, about keeping his secret. "Sometimes, people ask me to go play basketball, and I have to say no."
Drew can no longer run or jump, but he still helps coach the school's lacrosse club.
Other than the handicapped parking sticker in his SUV, and the infrequent, ever-so-slight stoop of his 6-foot-3 frame, Drew is virtually indistinguishable from any healthy student — which is exactly how he wants it. He lives in a fourth-floor dorm room, carries a full-time class load and has a girlfiriend.
"I want to be remembered for things other than what's wrong with me," he said.
He is scheduled for more surgery this summer, but he intends to work in a mission trip first. Then he'll go back to school to continue his work toward a mathematics major; and eventually he plans to teach high school.
"I have to accept who I was, who I am, and who I am going to be," Drew said.
"It's gonna be harder than I hoped for, but I've gotta get done what I've gotta get done."
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