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Family fights rare disease

You've heard the saying "tough as leather," but here's a case that might more accurately be called "tough as Leathers."

Life was going smoothly for the Leathers brothers, Chad, Ben and Drew, until five years ago when Drew, the youngest, was diagnosed with Schwannomatosis. This rare nerve disease causes extreme pain due to tumors, which can be larger than a softball, growing around individual nerves. There is no cure for this disease. Heavy medication and surgery are the only options. So far, Drew, 19, has had nine surgeries, including one in March 2006 to prevent paralysis.

But the Leathers brothers, who live in Lilburn, will not let this get them down. They started a campaign to raise money for the Children's Tumor Foundation for research to find a cure, so people like Drew may someday live pain free.

"The boys were close in age and were always best buddies, but seeing Drew's lot in life has made them so much closer and reinforced what we already knew was most important in life - support of family," said their mother, Fran Cone.

Ben, 21, wrote a song about Drew, while Chad, 22, designed a Web site where the song plays in the background. The brothers call themselves Tumornators and designed black T-shirts with the slogan "So tumors won't be back."

Then the entire community drew together as family. The Gentry Shop and STA Shop donated the T-shirts. Arcado Elementary School raised $1425 for the cause. Various clubs at Parkview High School raised money, while teachers there collected $830 with a Dress Down for Drew Day.

"Grayson Elementary School circulated Drew's story via e-mail and a teacher gave up Coke for Lent and contributed all the money to the Tumornators," Cone said.

Then a childhood friend, Taylor Brown, contacted Drew. Brown, 22, was diagnosed with Hodgkin's Lymphoma and was undergoing chemotherapy. She posted Drew's site on her Web site, www.CaringBridge.com, which offers support or people with serious illnesses. From this link, a recording studio booked the brothers to make a CD to raise additional funds.

And good things keep happening. A story about the Leathers brothers will be airing on Fox 5's "Good Day Atlanta" on May 2. Ben is arranging a fundraising concert featuring Nate Nelson (www.natenelsonmusic.com ) on May 8 at Tasty World in Athens. And on May 20, Chad will raise money for CTF in a half-iron triathlon in Orlando.

"It's so appropriate, because a triathlon is the celebration of the human spirit because you push yourself beyond what a human being can possibly do. It's a perfect analogy for people with this disease," Cone said.

The Leathers brothers will hang tough and keep pushing themselves to ensure that someday these tumors won't be back. To contribute or get involved, visit www.tumornators.com.

Susan Larson is a Lilburn resident. E-mail her at susanlarson4@yahoo.com.