Close
Close
People News

Staten Island teen with rare disease meets NY Ranger Henrik Lundqvist

3.66666666667
3.7 from 3 votes
Monday, April 15, 2019

Learn more about:

Clinical Trials

STATEN ISLAND, N.Y. – A Great Kills teen courageously battling a devastating degenerative disease received a magical surprise recently -- a chance to meet his hockey idol with his best friend along for the ride.

Thomas Celentano, 19, had the opportunity to meet New York Rangers goalie Henrik Lundqvist -- who left his tough-guy persona on the ice and won the lifelong fan over with warmth and compassion during a meeting in the team locker room post-game at Madison Square Garden.

Celentano is fighting ataxia-telangiectasia (A-T), a progressive, degenerative disease which has taken its toll on his independent living skills and has no known cure.

Along with his best friend, John Chianchiano, and his parents, Teresa and Richard, he was invited to take in the Rangers game in high style – in a dine-in suite that easily accommodated his wheelchair and afforded a priceless view of the action. Thomas' sister, Alysa, 22, is away at college, so didn't attend.

To sweeten the deal, two-time Stanley Cup winner and retired Ranger Adam Graves, stopped by the suite to shake hands and share a few laughs with the Celentano family. The event was arranged by Staten Island University Hospital, Madison Square Garden's Garden of Dreams Foundation and the Henrik Lunqvist Foundation.

The entire event was a blessing, Teresa Celentano said, but meeting Lundqvist in the team locker room, where the player presented him with an autographed jersey, was beyond her son's wildest expectations.

"Thomas was so happy to meet him -- on cloud nine," she said of her son. "He's a man of few words, but he does show that he's happy. We were all stunned and in disbelief.''

'PERFECT, FROM BEGINNING TO END'

The whole evening "felt like it was orchestrated by heavenly beings,'' Teresa Celentano said, noting that traffic was light for the drive into Manhattan and the family found a parking spot just two blocks away from Madison Square Garden. "Can you believe that?,'' she asked, laughing. "It was perfect, from beginning to end.''

And though the Rangers lost the contest with the Ottawa Senators 4-1, you wouldn't know it by Thomas' face – or Lundqvist's either, they said.

"He kept a good smile on his face even though they lost,'' said Chianchiano of the goalie. "He was aggressive stopping those goals, but he wasn't upset that they lost.''

Teresa Celentano said the goalie's manners impressed her. "He spoke to Thomas,'' she said. "He didn't stand above him or stay away at a distance. He was not awkward in any sense. He was so real, so kind, so compassionate.''

Chianchiano, buddies with Thomas since pre-school years, said his best friend has a similar disposition – tough in the face of challenge, yet gracious and always kind.

"He keeps a good spirit,'' said Chianchiano, who also received an autograph on the jersey he wore to the game. "He keeps his head up and he smiles.''

AN ENDURING FRIENDSHIP

Those smiles, in large part, are a reflection of the boys' enduring friendship, his mother says.

"Johnny has been with Thomas through thick and thin,'' she says of Chianchiano, who spends just about every Friday night with her son, watching sports and sharing laughs. "Through it all, Johnny never missed a beat.''

The years with A-T have been challenging for Thomas Celentano, who now uses a wheelchair and can no longer feed himself. He was diagnosed at age 8, after years of frustration, missed cues and wrong turns, his mother said.

"We always knew there was something going on,'' she said. "Just from the position of his feet, the way he rolled over. There was just something off.''

Though currently there is no cure for A-T, a young girl in California is undergoing an experimental gene therapy estimated to cost $1.8 million, Teresa Celentano said, adding that she's watching the case closely, hoping for good results.

"If she gets good results, hopefully a lot more kids might be cured, or at least the progress will be stopped,'' she said.

A RECESSIVE GENETIC DISEASE

A-T is a recessive genetic disease, as parents do not exhibit symptoms, but they each carry a recessive A-T gene. Each time two A-T carriers have a child together, there is a 25 percent risk of having a child affected with A-T. And every healthy sibling of an A-T patient has a 66 percent risk of being a carrier.

The first signs of the disease usually appear in toddlerhood. Like Thomas, children with A-T start walking at a normal age and often hit developmental milestones on time. As they age, their skills deteriorate.

Thomas was recently diagnosed with lymphoma, and completed seven months of treatment in March. Throughout the battle, his attitude continues to amaze friends and family.

"Nobody wants this diagnosis,'' his mother said. "But, he's a trooper. He's sweet, optimistic, persevering.''

He doesn't even consider himself disabled, she says of her son with a laugh. "He'll always tell you to save the handicapped seating for someone else who might need it,'' she said.

He also keeps a keen wit, said Dr. Nwanneka Okolo, director of pediatric neurology at SIUH, who has treated Thomas for several years. "That personality,'' she says with a laugh. "Over the years, we've had to wait a little longer, but that punchline is coming.''

MORE RESEARCH NEEDED

Less than 1,000 kids nationwide currently have A-T, which is why misdiagnosis is so common, and more research is needed, according to the A-T Children's Project (ATCP), a not-for-profit dedicated to raising funds to support patients and research.

The Celentanos have an ally in ATCP, she said. And though Teresa Celentano knows she could get financial assistance from ATCP (her home isn't handicapped-accessible and the wheelchair-accessible van is ready for replacement), she's not asking.

"I'd rather they use the money to find a cure,'' she said, firmly. "Get a little bit closer to a cure. That's what I want.''

Until then, she prays, counts her blessings, and enjoys precious time with her son.

In the beginning, "I kept praying, 'take this away from him','' she recalled, noting that children with A-T are not expected to live past the age of 22. "But, at some point, a peace washed over me, and I swear to you, in my ear, a little whisper just said, 'enjoy him.' I'm absolutely enjoying every day.''

Author: Ann Marie Barron
Source: SILIVE
3.66666666667
3.7 from 3 votes
Free Newsletter