From genetic illness springs an ode to joy

An abnormal chromosome is the likely root of a woman's extraordinary musical gifts.

By TERI SFORZA
The Orange County Register

Doctors showed Liz Costello pictures of grotesquely, shockingly, horribly misshapen faces, and said two words that turned blood to ice: "mental retardation."

Liz's 18-month-old daughter, Meghan Finn, had a mysterious condition called Williams syndrome, doctors said. Little was known about it. But one thing seemed blazingly clear: Baby Meghan would never have the life a mother dreams of for her child.

As Liz worked through the devastation, she noticed something peculiar. Meghan. The radio. And her toy piano. Meghan would hear a song, then pick out the tune. And the chords. An odd thing for such a young child to do. Especially one labeled "retarded."

It was the first indication that something extraordinary was afoot and that nothing was quite what it seemed.

Meghan is now 29. Her face is elfin and lovely, not grotesque and misshapen. She is a chatterbox, a jokester, a social butterfly, with the loquaciousness and musicality so typical of Williams, which has caught science so off guard.

"When I play piano, I have my eyes closed," Meghan explains. "It takes me away to a whole different place far, far away. It's a beautiful feeling. I just close my eyes and dream away. Sometimes, I cry - not because of what I was born with, but because of the excitement."

Music is like soup, she told famed neurologist Dr. Oliver Sacks and CBS' "60 Minutes" when they did shows on Williams during the past decade. It melts down your throat and feels so warm. So, music is like soup. It tastes good.

Scientists now know that Williams syndrome is a genetic aberration that occurs once in every 7,500 births. It springs from a tiny error on one copy of chromosome 7 - about 20 genes are simply deleted - but it exacts an enormous toll on body, brain and personality. The result is an atypical body and a profoundly asymmetrical mind.

Williams people often look alike, with puffy eyes, upturned noses and pointy chins that evoke sprites of folklore. They are missing a gene for elastin, the protein that allows tissue to stretch and contract, and so are prone to heart and other health problems. They are often terrible at spatial tasks - flummoxed by math, unable to imagine three-dimensional objects, hopelessly lost trying to follow simple directions to the bathroom - leading scientists to believe they're close to finding the "spatial-thinking gene." But they also show surprising strengths: extreme sociability, strong language skills and this strange, passionate aptitude for music.

Mom Liz couldn't help but notice it. Williams kids don't just listen to music; they crave it, experience it, intensely consume it. Liz was struck by the transformation that came over Meghan when she heard music: Meghan would grow suddenly calm, focused and soothed by the sound.

Meghan took some piano lessons as a child, but it wasn't until Liz sent her to a specialized music camp in Lenox, Mass. - co-founded by retired UC Irvine professor Howard Lenhoff, whose daughter Gloria is an operatic soprano with Williams syndrome - did the full scope of Meghan's abilities become clear. The camp director pulled Liz aside and said: "Your daughter has a voice. You have to do something."

Now, Liz says, Meghan thinks things through with music. She quiets her mind with music. Music is how she expresses who she really is.

Against all expectations, Meghan has become the "pop star" of the Williams world. She has performed at fund-raisers and accepted awards all over the nation. Put a microphone in her hand, and she's transformed: She whips the cord around, tosses her head back and thrusts her arms toward heaven à la "Viva Las Vegas." She crisscrosses the stage, belts out vampy versions of "The Glory of Love," banters with her audience about rock 'n' roll, her astrological sign and the syndrome that has helped define her life.

"Williams syndrome is not a disease," Meghan explains. "I don't call it that because I'm not going to die from it. It has to do with the deletion of chromosomes on chromosome 7. And it does different things to you inside and outside of the body. I have a hard time with balance and depth perception, but I have a great time talking to people. I have a hard time with math, but I love to dance. I have a hard time with reading comprehension, but I learn something new every day. 'Loafing' is one of my new words. I thought it had something to do with baking bread, but it actually means to not work."

Meghan volunteers one day a week tending to the kitties at the San Clemente Animal Shelter. "Cats were used in a very strong manner in the life of the ancient Egyptians," Meghan says. "I love the precious babies. I love it when they purr. My mom said I have a gift with animals."

She works three days a week putting security stickers on items at the Vons on Camino Capistrano. "You'd be surprised what gets stolen. Batteries, meat - and there's a guy who's been stealing diet pills," she says.

She lives in her own apartment in the Casa de Amma complex in San Juan Capistrano, which is designed to allow people like her independence with a safety net. The doormat is festooned with kittens, the sofa is brilliant red, family pictures brighten the walls.

"I love the freedom I have here. I love going out with my friends. I love that I can clean my own house. I love that you can do whatever you want because it's your own apartment," she says.

Meghan navigates public transportation, attends a women's club and can barely be pried from the upright piano in Casa de Amma's basement. She plays a lyrical "Remember When it Rained" by classical-pop heartthrob Josh Groban entirely by ear, launches into a song from her childhood and then plays a waltz that she speeds up and slows down to make her mother laugh.

Liz, who has a master's degree in social work and does workshops for mothers of children with disabilities, has moved to San Clemente with her husband, Bob, to be closer to Meghan. Liz and Bob now work in real estate. Mother and daughter talk every day.

After two years here, San Juan Capistrano is embracing Meghan. She has played piano at Chamber of Commerce mixers, in the lobby of the Farmers Merchant Bank at holiday time, at private Christmas parties. Today, she'll sing "On Broadway" at a fundraiser for Vocational Visions, the nonprofit that helped her find her job. Her CD, "Meghan Finn," is for sale online at her Web site.

Meghan has done workshops with her mother, telling people that there is beauty and uniqueness in every single one of us, disabled or not. "Williams syndrome doesn't make me stupid," she told a crowd at music camp in Lenox. "Just remember us by our talents. We don't have stupidity. We just have love."

Liz looks with genuine wonder at the daughter whose prospects once seemed so dim. "Meghan," she says, "has a life."

 tsforza@ocregister.com