MUSIC IN HER SOUL

Syndrome Denies Woman Some Skills but Gives Her Another

By STEVE CHAWKINS
Los Angeles Times, Sunday July 4, 1999.
Ventura County Edition Metro Part B Pages 1 & 4

Trieana Moon doesn't need much coaxing to perform. She sings day and night. Ask her to turn up the volume and she'll belt it out like an amateur-hour gospel shouter. Hand her a mike and she'll work the room like a Vegas lounge singer.

"How you all doin' today?" she booms in a voice that sounds especially huge for someone less than 5 feet tall. "You're lookin' mighty fine! Are you feelin' fine?"

"Oh yeah!"

The crowd at the Ojai Enrichment Center, where Trieana spends most of her days, loves her show-biz banter. Some of her fans are profoundly retarded, swaying to their own rhythms; others are more engaged, howling when she singles out a friend in the audience as "just soooooooo sexy!" Trieana connects with them; at 24, she has the intellectual abilities of an 8-year-old child but the stage presence of a musician on perpetual tour.

In a literal sense, she has music in her genes. She was born with Williams syndrome, a rare condition that robs people of intelligence but often endows them with musical talent and a gift of gab. Recognized in 1961, Williams syndrome has recently lured scientists intrigued by the secrets it could yield about brain function and the nature of intelligence, and even researchers investigating the history of leprechauns.

But all that is a world away from Trieana, whose favorite thing in life--next to family, friends and music--is tuning in to her idol, TV's Rosie O'Donnell.

"Williams syndrome?" she says slowly. "Well, I just don't know anything about that."

Neither did her parents or doctors--until recently.

"Before she was a year old, we knew she wasn't what they call 'normal,' " said Carolyn Moon, Trieana's mother. "We were just told she was developmentally delayed."

Trieana's eyes were crossed. It would take two operations and thick glasses to correct her vision. She didn't walk or talk as early as other children. She had heart problems. Her forearms and wrists were so rigid she couldn't lay her hands flat--a disability she has overcome with extensive therapy. As she grew older, it became clear she would go through school in special education classes and might never live on her own.

"She has no conception of money, or time," her mother said. "She has no sense of being fearful--but if someone really approached her, she'd just wilt. She wouldn't know what to do."

Not long ago, Trieana insisted on boarding a bus alone for a trip from her family's Oak View home to the mall in Ventura 10 miles away. Carolyn Moon and her husband, John, followed in a car close behind.

"We were terrified," Carolyn said. "When the bus dropped her off, she just headed in on a dead run--like, 'Oh yeah! I'm going to the mall!' "

It was also clear early on that Trieana could navigate chords and scales and harmonies without being able to read a single note. She made up her own songs and memorized hundreds of others. After school, she would sit down at the family-room piano and pound out melodies she had heard on the car radio minutes before.

"I'd hear a song and all of a sudden my eyes would get wider and--ping!--I'd just have to play it," she says.

Larry Hartman, the former principal of Ojai's Summit School, still remembers Trieana's talent-show performance a decade-and-a-half ago.

"She sang 'You Light Up My Life,' and boy, did she wow everyone," he said. "There was a standing ovation. It wasn't so much the quality of her voice, but the way she belted it out, like a real pro. I'll always remember that."

After attending special education classes at Nordhoff High School, Trieana studied at Hope University, a school for the developmentally disabled in Orange County. She joined a school musical group called the Hi Hopes, and even sang on Marilu Henner's TV talk show.

That was when Trieana's mother received a fateful telephone call from a Williams syndrome father, Howard Lenhoff, who saw Trieana on TV.

"He said, 'I'd like to tell you a little about Trieana. First, you never did anything to cause this. . . .' I was in tears by the end of the call."

It was the first time Carolyn Moon had heard of Williams syndrome. "There was never a name put to what she had," she said. "There was never an explanation. I'd always felt in such turmoil. . . ."

A biochemist at UC Irvine and a noted Williams syndrome researcher, Lenhoff also told her about the remarkable musical talents he'd observed in many Williams kids, starting with his own. His daughter Gloria is a Williams syndrome celebrity; she has appeared with opera companies across the U.S. and can sing in 25 languages.

As an astounded Carolyn Moon absorbed Lenhoff's dead-on description of Trieana's condition, he ticked off question after question about Trieana's medical history:

Heart murmur? High blood pressure? Frozen forearm? Poor coordination?

Yes, he said, they're all common in Williams kids--just like Trieana's learning difficulties. Her short stature and pixie-like upturned nose are Williams trademarks, he said, suggesting that tales of leprechauns and other wee folk derive from Williams syndrome people born long ago.

It wasn't until 1961 that a New Zealand researcher, J.C.P. Williams, linked many of the symptoms in this medical grab bag. However, he didn't get to enjoy his achievement for long; several years after writing his landmark paper in 1961, he boarded a train in Great Britain and never was seen again.

Today, Williams syndrome can be recognized in blood tests--or, as in Trieana's case--educated observation.

"I saw her and said to myself, this gal's got it," recalled Lenhoff. "She's got the Williams syndrome look."

He also figures she has the genetic makeup. Scientists have discovered that the one in 20,000 babies born with the syndrome lack a particular chromosome in 20 genes. That deficit might explain some of the syndrome's common physical traits, but nobody has yet associated it with enhanced musical or verbal abilities.

"We're still very much in the dark," Lenhoff said.

However, he added, a study of musicians with perfect pitch has yielded an enticing hint. The only unusual thing about the brains of those musicians appears to be an enlarged region called the left planum temporale, Lenhoff said. Williams syndrome people tend to have brains 20% smaller than average, but the left planum temporale is normal or a bit larger--thus occupying more of the brain than it does in others.

Many Williams syndrome people have perfect or near-perfect pitch, said Lenhoff, one of the founders of a Williams syndrome music camp in Lenox, Mass. It is often a difficult call, because few can read music or pick out all the notes by name.

"My general feeling, and that of many music teachers, is they have a marvelous ear--but they aren't savants in the sense of hearing a symphony or concerto and playing it immediately," Lenhoff said. "They have to work on it, but less than we do."

Trieana and Lenhoff's daughter, Gloria, are now friends.

"They're like sisters," Lenhoff said.

Unlike Gloria, Trieana doesn't have a voice coach or an agent booking her with the likes of the Los Angeles Opera. Her voice can be a little thin and she might miss an occasional note on the keyboard, but her passion is obvious and her talent is in demand.

During the noon hour on most Fridays, she hunches over a keyboard at the Magic Muffin, an Oxnard restaurant run by the Assn. for Retarded Citizens. The music is part Scott Joplin, part "Amazing Grace," part "Turkey in the Straw"--all played with cocktail-lounge trills and flourishes.

She belted out a Mariah Carey song at the recent opening of a new association facility in Ventura. Next year, she is to kick off Ventura's Special Olympics with "The Star-Spangled Banner."

And almost every afternoon at the Ojai Enrichment Center, the show goes on, with Trieana at the keyboard, friends chiming in on vocals and volunteer guitarist Bill Hubby providing the backbeat.

On the blackboard, someone has drawn a happy-face, a table, a chair, a cup. From time to time, aides wander through, gently rubbing a back here, doling out a hug there. On this afternoon, Trieana has played Elvis, and the Judds, and "Amazing Grace," and thanked God for her music, and reminded the crowd that Jesus is looking down on them, to which someone replied, "Uh-oh."

"How you all feelin' today?" she asks, not for the first time.

"Just to let you know that I'm feelin' mighty bluesy right now--and when I feel bluesy, that's when ... I ... ROCK ... YOUR ... WORLD!"