Glorious Singing

I FOUND THIS TO BE one of the more intriguing books that I have read during the last couple of years. It is about three separate but related subjects: Gloria Lenhoff, a woman with an IQ of 55 who can sing opera in 25 different languages; Williams syndrome, which afflicts Gloria; and Gloria's father, Howard Lenhoff, and what he has done to promote the nationwide recognition, understanding, and wellbeing of people with Williams syndrome.

Gloria gets lost easily, and can't do basic arithmetic, tell left from right, or read music,* but she is a classically trained lyric soprano with a repertoire of thousands of songs. She was born in 1955 and her infancy and childhood were filled with developmental and behavioral problems. She was small in size, had "terrible" colic, a slight heart murmur, and was "cranky beyond imagining."

But very early in childhood her intense interest in music became so strikingly apparent that her mother, Sylvia, began to take steps to assure her talent was developed. By the time she was 32, she had received extensive musical training and was singing in foreign languages. She also was singing with a band of what were, at one time, labeled with the dreadful name of Idiot Savants, which later resulted in the production of a public television program titled "Gloria." This led to the Lenhoffs becoming aware that she had Williams syndrome.

The physical characteristics of Williams syndrome were first described by cardiologist J. C. P. Williams in 1961 and a year later by cardiologist Alois J. Beuren.

The psychological characteristics were described in 1964, at which time the children's "friendly and loquacious" personalities and "unusual command of language," as well as their enjoyment of music were noted.

Some of the fundamental research on Williams syndrome began in the mid-1980s by Ursula Bellugi of the Salk Institute in San Diego. Although Bellugi felt her area of expertise didn't include the inquiry of music, she and her coworkers found an asymmetry in the left and right planum temporale of Williams syndrome people similar to that seen in professional musicians.

In 1993 Colleen Morris of the University of Nevada reported that one of two elastin genes on chromosome 7 is missing and a length of DNA on either side of it also is missing. The absence of the elastin gene is considered significant for the physical characteristics and abnormalities of Williams syndrome.

Additional research findings by Bellugi and her group on higher order thinking skills, spatial skills, and "theory of the mind" are also well documented in the book. Williams syndrome is considered a scientific mystery that offers a window into the mechanics of the human mind and Bellugi considers it one of the most interesting things she has ever come across.

Howard Lenhoff is a biochemist, now retired, who is described as the sort of person who could work himself into fits of passion over biochemistry and its infinite possibilities. His field of research was freshwater hydra, which he strongly hoped would someday help us understand normal and abnormal embryonic development.

When he learned that Gloria had Williams syndrome and that many people with the syndrome had unusual musical talents similar to Gloria's, he became interested in promoting greater recognition of those talents. He soon was devoting all of his great energy and abilities to publicizing the unusual musical gifts so many of these people have to offer.

By this time two separate organizations had been formed: the Williams Syndrome Associa-tion, primarily a support service for parents; and the Williams Syndrome Foundation, involved in funding scientific research and long-term planning.

Howard soon became president of the foundation's board of directors and enabled the funding of research into the musical abilities of Williams syndrome people. Such research was considered threatening to the association's support of parents who felt their children had no special talent for music. The resultant infighting is a fascinating story in itself.

The author presents these three subjects clearly and understandably without oversimplification, and masterfully segues from one to the other.

peniston@mcn.org

For details about physical abnormalities that may be associated with Williams syndrome see http://children.webmd.com/Williams-Syndrome-11011, or http://www.Williams-Syndrome.org