Boy faces rare condition courageously

By John Turner / The Citizen

Saturday, May 3, 2008 11:16 PM EDT

AUBURN - Five-year-old Levi Stuart is an extremely brave young man.
At the age of 10 months, the Port Byron resident was diagnosed with meningeal sarcoma, an extremely rare condition in cancer sufferers that affects tumors on a person's brain.

The disease is so rare, in fact, that Levi is one of only a handful of people in the United States living with the condition.

Nevertheless, Levi was all smiles Saturday at a fundraising extravaganza held for him at the Ukranian National Club in Auburn. The affair was attended by hundreds of friends, family and well-wishers.

“Levi's one of only four in the country that has (meningeal sarcoma),” Cameron Stuart, Levi's grandfather, said outside the UNC Saturday evening.

When his grandson was an infant, Cameron said, tumors were discovered on his brain and he was rushed to University Hospital in Syracuse. When surgeons operated to remove the growth, Levi suffered a stroke, causing him to lose most control of his right hand.

Even so, his grandfather said, Levi is still a bright, energetic young man.

“He can play video games better than I ever could,” Cameron said.

Cameron said that Levi recently underwent “gamma knife” surgery, a fairly new procedure in which surgeons use beams of electromagnetic rays to remove brain tumors.

The “non-invasive” procedure was done at University Hospital, which has been performing gamma knife surgery for about five years.

“Levi's the youngest person to have (undergone) that surgery,” Cameron said.

On Saturday, Levi was simply a happy 5-year-old as hundreds of guests stopped by his table to wish him well.

Levi's brother, 8-year-old Jacob, stood dutifully outside the club's entrance, acting as unofficial doorman for entering visitors.

The evening included performances by area troupe The Fancy Footwork Dancers and Moravia musicians Sarah and Chelsea Horner with guest guitarist Greg Carroll.

At 6 p.m., event emcee Art Wenzel hosted an auction that featured decadent merchandise like a vacation to the Thousand Islands, a lawn mower from Home Depot and an autographed portrait of Eli Manning donated by the New York Giants.

Outside the club, Levi stood shyly behind his grandfather.

Cameron said that Eli's family recently took a trip to DisneyWorld in Orlando, a vacation donated by the Make-A-Wish Foundation.

“Did you have a good time down there, Levi?” Cameron asked his grandson.

Turning bright red, Levi buried his face in Cameron's leg as he grinned from ear to ear.

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