With a song in her heart

By John Wilkens
STAFF WRITER - San Diego Union Tribune
June 24, 1999

Chances are you have never heard of Gloria Lenhoff, but in her world she is a superstar.

Her world is Williams syndrome, a rare place where people are born with sad disabilities and astonishing gifts, a peaks-and-valleys existence that fascinates scientists for what it says about the human brain and the human spirit.

Gloria Lenhoff's disability is mental. She has an IQ of 65. At age 44, she can't add 5 and 6, can't make change from a dollar, can't judge distances well enough to safely cross the street by herself.

She can't read a note of music, either, but music is her gift. She has perfect pitch, a soaring soprano voice and a computerlike memory that enables her to sing 2,000 songs in 25 languages.

Lenhoff will be in El Cajon Sunday, 6-27 performing at a benefit for St. Madeleine Sophie's Center, a nonprofit organization that nurtures the gifts of other disabled adults.

She is scheduled to appear with a 65-piece orchestra, singing arias from "La Bohème" and "Don Giovanni" and a tune from "Carousel"; those who have heard her say there may be tears in the audience by the time she is through.

"Most people expect a novelty act, something cute," said her father, Howard Lenhoff. "She is quite a bit more than that."

Enough "more than that" to be featured on television and in award-winning documentaries. She has performed with nationally known opera stars and been on the faculty at music symposiums.

Mandy Patinkin, the Tony-winning singer and actor, heard her and said this: "Just listen to her sing, and the very nature of intelligence is brought into question."

Shortly after their daughter was born, Howard and Sylvia Lenhoff knew that something was wrong. It would be years before they realized that something was wonderfully right, too.

Gloria didn't walk when she should have. She didn't talk on time, either. The doctors diagnosed her as mentally retarded. The schools put her in special education classes.

When she was 12, her parents gave her a small accordion. She had always loved music, loved singing, and the Lenhoffs thought that she might enjoy the accordion, too.

She did. There was something instinctive about the way she fingered the buttons and keyboard.

Her parents tried to get her lessons, but most of the instructors wanted her to read music. The Lenhoffs found a teacher who was more flexible. She had taught prison inmates how to sing. She took on Gloria.

The girl's bat mitzvah, a Jewish coming-of-age ceremony, was a turning point. She stunned people by singing flawless Hebrew from the Song of Songs, the Lenhoffs said. She played the "Anniversary Waltz" on the accordion.

The family was living in Florida then. They moved to Israel for a year, and then to Irvine, where Howard Lenhoff, a biologist, took a job at the University of California campus. At every step, the parents tried to nurture their daughter's passion for music. They hired Irvine students as instructors for voice and accordion. Her skills grew.

As with all parents of disabled children, what the Lenhoffs wanted most for Gloria was something approaching normalcy. They enrolled her in classes on self-reliance. She learned how to ride the bus on her own and worked as a teacher's aide at a preschool.

All this time, the family did not know the exact nature of Gloria's disability. Williams syndrome wasn't identified until 1961, six years after she was born, when a New Zealand pediatric cardiologist, J.C.P. Williams, recognized specific similarities in a handful of his patients.

Those similarities include heart defects, outgoing personalities and elfin facial features: small, upturned noses, puffy eyes, large ears and broad mouths with full lips.

It wasn't until 1988 that the Lenhoffs heard the words "Williams syndrome." That was the year Gloria and her music were featured in a PBS documentary, "Bravo Gloria," made by Arlene Alda.

The program aired nationwide, and the Lenhoffs began receiving letters and calls. "Your daughter has Williams syndrome," all the correspondence said.

Howard and Gloria went to a picnic of Williams families. There were children of all ages, children representing the various stages Gloria had passed through already.

Howard heard other parents talking about slow growth, sleepless nights, the fascination with spinning objects, the fused bones in the forearms -- all characteristics the Lenhoffs thought were peculiar to their daughter.

"It was like 'This Is Your Life,' " Howard told his wife when he came home from the picnic.

Williams syndrome is estimated to occur in 1 out of 20,000 people. In the United States and the United Kingdom, two countries with active support organizations, about 5,300 people have been identified with the condition.

Scientists believe that those with the syndrome are missing 15 or more genes from one of their chromosomes -- genes that control various physical, behavioral and cognitive abilities. The cause of this defect is not known, nor can it be prevented. It is, according to the specialists, a genetic accident.

Researchers who study Williams -- Ursula Bellugi at the Salk Institute in La Jolla is among the leaders -- hope to open windows on how the brain develops and functions.

If they can identify the missing genes, and how those genes affect physical and behavioral features, their work might have broader implications for a host of other disabilities and talents.

They want to know, for example, why so many [people with Williams Syndrome] (a term they use themselves) have strong verbal skills, including a talent for storytelling, despite their moderate IQs.

They also are intrigued by those, like Lenhoff, with seemingly innate musical talent. Some have uncanny rhythm, learning complex drum beats quickly. Others write their own songs, or have a special feel for harmony.

Every summer, a music camp in Lenox, Mass., opens its doors for a week to the Williams community. They sing and dance and put on talent shows. For some, it is the first time in their lives they see people just like them.

Howard and Sylvia Lenhoff are among those trying to raise money to expand the camp and establish year-round musical academies for [people with Williams Syndrome]. They would be places to learn about music and the arts, as well as life skills enabling them to be more independent, Howard Lenhoff said.

In the meantime, Gloria Lenhoff tours regularly. In addition to events at music halls and opera houses, she sings at churches, schools, senior centers and nursing homes.

She lives with her parents in Costa Mesa, and they accompany her wherever she goes. Howard Lenhoff is her "roadie," lugging her accordion and other musical equipment. He has business cards that identify him as "Gloria's Dad."

They were in San Diego recently to rehearse for Sunday's fund-raiser. (It will benefit St. Madeleine's effort to open a "Sophie's Gallery" for developmentally disabled artists in downtown El Cajon.)

Gloria also went to the Tifereth Israel Synagogue in San Carlos, where she will perform on July 25. There, she sang some opera. She sang some Otis Redding. She sang some Patsy Cline.

"I like performing," she said. "I like showing other people what I can do. Just spreading the word."

When she had finished singing, a custodian at the back of the synagogue's social hall applauded. He got to talking with the Lenhoffs, and told them he was originally from the Philippines.

Something registered with Gloria. She knows about 2,000 songs by heart, and the national anthem of the Philippines is one of them. She started singing it.

The custodian put his hand over his heart and sang with her.


Copyright 1999 Union-Tribune Publishing Co.