11-year-old anthem singer draws attention to disorder

July 20, 2007

tention/ (photo of Amy at link)

Paddy O'Shea, Correspondent

When Amy de Silva takes the microphone and sings the national anthem

before Saturday's nationally televised Red Sox game, she will also

be sending a message.

The 11-year-old is drawing attention to the condition she has,

Charcot-Marie-Tooth Disorder, which impairs the nerves and muscles

in her extremities - making it difficult for her to walk, play and

grasp things with her hands.

Amy said she isn't nervous. For one thing, she sang " God Bless

America " at Fenway last year. And singing in front of a huge crowd

is nothing compared to what she has already dealt with in her young

life, including multiple surgeries and years of physical therapy.

She said her voice is a blessing she wouldn't trade even for healthy

hands and feet.

" I'm most looking forward to just singing - it's really, really

fun, " she said. " I feel very proud that I've been able to do what a

lot of people with disabilities think they can't do, and I hope I

can be an inspiration to people with disabilities for what they can

do. "

Last year, Amy met her favorite Red Sox, Ortiz, last July when

she sang during the seventh-inning stretch. She also got to try on

one of the 2004 World Series rings.

" Seeing her wear the World Series ring - it was almost as big as her

hand, " Amy's mother, , said. " It was the experience of a

lifetime. "

2.6 million people are affected by Charcot-Marie-Tooth Disorder,

which causes progressive deterioration of sensory nerves and muscle

function in the extremities. Amy cannot lift her fingers, grip,

button, do her own hair or even open a door or can of soda.

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