Published: February 24, 2008 10:44 pm            

TOWN OF TONAWANDA: Sabres alumni help raise money for Jon Jon’s Journey

TOWN OF TONAWANDA — Former Buffalo Sabres Rob Ray, Grant Ledyard and Richard Smehlik helped Jon Jon’s Journey take a big step forward Sunday night.

Members of the Buffalo Sabres Alumni Association took on a team comprised of Kenmore and Town of Tonawanda police officers at Lincoln Arena to raise money for 6-year-old Jon Jon Cinelli, who last year was diagnosed with a rare brain tumor.

Several hundred people came out for the event, including Vincent Christiano, who just joined the town’s police force and is currently in the police academy. “Having three kids of my own, I empathize with what Jon Jon’s parents are going through,” said Christiano, whose children are 7, 6 and 3. “What little we donate to the cause is going to be minuscule to what it’s going to cost them.”

Christiano was hoping to get a spot on the police hockey team’s roster for Sunday’s event. However, so many members offered to play that first dibs went to those with the most seniority.

After taking a 5-0 lead after the first 20-minute half, Sabres alumni players signed autographs, then returned to the ice for the second half. With a little help from some scoreboard changing, the police team clawed back and took the lead, before claiming a 2-1 shootout victory. Afterwards, both teams gathered at one end of the rink to pose for a photo with Jon Jon.

The real winner, of course, was Jon Jon, who stood across from Ray at center ice to drop the puck for the ceremonial face-off, and was greeted to loud applause both before and after the game.

Jon Jon’s parents were more than gracious for the support Jon Jon’s Journey has received thus far. “We are just super overwhelmed, really speechless,” said Anne Cinelli, Jon Jon’s mother. “It’s amazing how much the whole community has gotten behind our son Jon and what he’s going through.”

“It’s just incredible. Words can’t express it,” Jon Cinelli said in the locker room before taking to the ice. “It’s amazing how many people have come out to help him.”

Diagnosed Dec. 3, 2007 with intrinsic pontillar glioma — a nonsurgical tumor in the brainstem — Jon Jon began radiation and chemotherapy treatments at Roswell Park Cancer Institute and Women and Children’s Hospital.

Despite going five days each month for chemotherapy, Jon Jon has been handling his treatments well, his mom said. “He did great with the radiation and chemotherapy. He’s done really well. He’s gone to school through the whole thing. ... His teachers are just amazed at how well he’s doing.”

Scott McManigle coaches the Sabres alumni squad and is director of player relations for the Buffalo Sabres Alumni Association. The team plays between 12 and 15 charity hockey games and 18 contests against local high school basketball teams each year.

“They love doing this,” McManigle said. “They’re not looking at the clock, they’re not waiting to go home. These guys know that the people in the crowd are the ones that paid their salary at the time.”

Several alumni team members play in a summer softball league with retired Tonawanda paramedic Joe Otto, who asked if the former Sabres would be interested in playing a benefit hockey game for Jon Jon. Without hesitation, the guys agreed. “We do this for pure entertainment,” McManigle said, adding they’d like to make the game a yearly event.

The money raised from Sunday night’s benefit and another one slated from 1 to 8 p.m. March 29 at the Sheridan Park Fire Hall will go toward covering the family’s medical expenses. Jon Jon has received as much radiation therapy as he can, and the chemotherapy isn’t guaranteed to work. So, the Cinellis now are considering taking their son to the Burzynski Clinic in Houston, which treats the type of tumor Jon Jon has.

“When you’re dealing with a terminally ill child, it’s hard to know what’s the right thing to do,” Anne Cinelli said. She said they would like to donate some money to glioma research, because it “seems very grossly underfunded and researched.”

Treatment in Houston will take about a month, and it comes with a hefty price tag — $100,000 for the year, not including flights, a rental car and lodging while in Texas — none of which is covered through insurance. “We refuse to accept this as a death sentence for our son, and we will go to the ends of the earth to get him well ...” the family states in a blog on their Web site, jonjonsjourney.com.

It seems as though residents of the Tonawandas agree.

Contact reporter David J. Hill at 693-1000, ext. 115.

        

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