Young songstress overcomes physical challenges through reaching out with her voice

By THERESA CAMPBELL, DAILY SUN

THE VILLAGES — George and Irene Gagnon flash wide, proud smiles as they show pictures of their 12-year-old granddaughter, Amy de Silva — the child who captivates audiences with her angelic singing voice.

The Village of Poincina grandparents say Amy has performed for impressive crowds — the Massachusetts State House and Red Sox baseball games at Fenway Park — and also recorded “American Tears” for American troops serving in Iraq and Afghanistan.

And that’s not all.

Amy sang “God Bless America” on Sunday, closing the ceremony for the traveling Vietnam Wall at Lakeville, Mass., and June 12, she will be performing as the guest of Penn State Coach Joe Paterno during a black-tie gala for Charcot-Marie-Tooth Association.

Raising funds for CMT has become Amy’s passion.

“As long as I can remember, I have lived with CMT (Charcot-Marie-Tooth), a disorder that makes it difficult for me to do some of the things other kids can,” Amy said on the Charcot-Marie-Tooth Association’s Web site charcot-marie-tooth.org.

CMT is a progressive, inherited peripheral neuropathy that causes people to be unable to use their hands, arms, legs and feet like most people do.

“For me, CMT affects my hands, not allowing me to raise my wrists or fingers,” Amy said. “I can’t do everyday things like open a carton of milk, put in my earrings or button my pants. I used to feel sorry for myself, just because I was different and sometimes made fun of, but now I realize that I’m not a victim of this disease. I am a survivor.”

Amy is grateful to God that she can sing. She strives to use her voice to touch others.

“I want to help people who struggle with physical or emotional problems by becoming a music therapist,” she said. “That is my dream job.”

She is the daughter of William and Catherine de Silva of Dartmouth, Mass.

“When Amy was about 2, we noticed she was tripping a lot,” recalled her maternal grandmother, a nurse at The Villages Regional Hospital. Irene suspected something was wrong. Her daughter, Catherine, was concerned, too, when they noticed that Amy did not have enough strength to grasp items with her hands. Not even a Cheerio.

“When she got older, she had trouble buttoning and had a difficult time with a zipper. She now has a lot of things that are Velcro,” Irene said of the thin plastic fasteners on Amy’s clothes that make it easier for her to dress.

The Gagnons marvel at how Amy has adapted to life with CMT.

“She won’t let it get the best of her,” said Irene, adding that her granddaughter is blessed with a sweet personality.

“She is just infectious,” added George. “Amy does things, despite her disability, and she takes joy in doing it.”

George remembers he was awed the first time he heard Amy sing at a Red Sox game.

“It was totally amazing,” he said. “Fenway Park is sold out constantly, with some 38,000 people, and to hear Amy singing with no backup and this big smile on her face. The crowd was so responsive.”

The first time Amy performed at the Massachusetts State House, it was in honor of Nobel Prize winner Craig Mello, who separated RNA genes.

After that, Irene recalls, her granddaughter began getting more calls to perform.

Amy also keeps busy with community theater.

“I don’t know how she’s doing it all, and she’s an all-A student,” her grandmother said. “She’s constantly in an upbeat mode and is a happy kid.”

The Gagnons credit their granddaughter for inspiring them to enjoy life and make the most of each day.

“I’ve learned not to complain about little aches and pains and just keep doing the best that you can,” Irene said. “Because when you’re happy, life is great.”

Theresa Campbell is a senior features writer with the Daily Sun. She can be reached at 753-1119, ext. 9260, or theresa.campbell@thevillagesmedia.com.