BOY WITH REMARKABLE VISION: Nick Claudio is an active 12-year-old boy.
The Mattapoisett resident loves acting; last year, he was the Tin Man in the Old Hammondtown School’s production of “The Wizard of Oz.”
He also loves singing; he is part of Showstoppers, a musical troupe, which has been invited to perform at Walt Disney World in Florida this summer.
He loves to ski; Loon Mountain in New Hampshire is where he last took to the snow.
And he’s a numbers wiz; at Old Hammondtown last year, he earned an outstanding student award for his mathematical efforts.
He is also fighting choroid plexus papilloma. He was diagnosed at age 9 with the rare brain disease, which has robbed him of his sight. He did all of the above, plus learn Braille in a year, totally blind. Along the way, he’s developed a remarkable attitude. During a phone interview with him and his mother, Allison Claudio, his mom was explaining how he had lost his vision.
“No, Mom,” the boy politely corrected her. “I lost my sight, not my vision.”
Nick will receive the first Cam Neely Award for Courage at the 2013 Working Wonders benefit for Tufts Medical Center on March 7. The award is named for the former Boston Bruins star who is now team president and an NHL Hall of Famer. Neely is also founder of the Cam Neely Foundation for Cancer Care.
“Nick has endured more than most people three or four times his age, and yet he continues to embrace life in a way that is refreshing, inspiring, and most certainly courageous,” Neely said in a press release about the boy, who receives treatment at Tufts Medical Center’s Floating Hospital for Children. “I am thrilled that such an extraordinary young man will receive this inaugural award.”
Nick is now at Old Rochester Regional Junior High School in Mattapoisett, but has been unable to attend much this year. In September, he underwent chemotherapy every other week, followed by six weeks of radiation. He now faces three more rounds of the same, starting this month.
But he has a tutor who goes to his house every day, said Allison Claudio, adding that “the school district has been phenomenal, we haven’t had to ask for a thing.”
“He’s an amazing kid, I’m incredibly impressed how he deals with challenges, they don’t slow him down,” said Old Hammondtown School principal Matthew D’Andrea. “He continued to have leads in our plays, and he was lead singer in a rock band we had here that played at lunch.
“He’s a role model for the other students, showing nothing can stand in your way,” he said, “and that challenges are things that are meant to be met.”
“It’s exhilarating and time-consuming,” Nick said about his forays into acting and singing. “But it’s really fun.”
If there’s one thing Nick wants people to know, it’s that he is not disabled, and “feels insulted if they suggest that,” his mother said.
Again, politely correcting her, Nick said, “I just feel they’re derogatory. But I have to remind myself that they just don’t know, it’s not like they learn about this at school.”
No one in the family knew the boy could sing until he went blind. Until then, he’d played sports and was always listening to his iPod. But after he lost his sight, he started singing out loud to the tunes he was hearing.
“I thought ‘Wow, he’s good,’” his mother said, and thus his singing career began.
His writing began when he heard about a writing contest for the school paper at Old Rochester Regional Junior High School. His essay “Let Them Know” starts with the sentence, “As I wake up, I find myself on my stomach,” and then sets about in a light, fun way, to talk about his daily battle with his disease, the people who help him, what life is like. The essay won the paper’s creative writing award.
It concludes, “I think maybe I can let them know that I am a normal person. I can do things for myself, I can walk without support, but I just need a little guidance sometimes.
“I can think for myself and don’t need people thinking I am different. I know several people who do. They don’t need to feel sympathetic or bad or sorry. But this is just the first step to letting them know. I can at least start with my school. So I start writing a story and it starts like this.
“As I wake up, I find myself on my stomach. . . ”
BUSINESS BRIEFS: Jay Bernasconi of Braintree was appointed to the Massachusetts Board of Registration in Allied Health Professionals, by Governor Deval Patrick. The board makes decisions on licensure issues, and establishes regulations for physical therapy, occupational therapy and athletic training in the state. Bernasconi’s term is for three years. He owns Furnace Brook Physical Therapy in Quincy and Holbrook.
Paul E. Kandarian can be reached at Kandarian@globe.com.