Rare Syndrome Takes Much, Gives More

Back Up Next

 

Rare syndrome takes much from woman, gives more
By APRIL WILKERSON
Shawnee News-Star Staff Writer

February 27, 2003
lenhofffamily (6919 bytes)
 
Gloria Lenhoff, 48, is pictured with her parents, Howard and Sylvia Lenhoff. They live in Mississippi. Gloria, who has Williams Syndrome, is a lyric soprano and plays the accordion. She will give a recital at OBU tonight.  

She has trouble with seemingly simple tasks, like crossing a street, but she can sing in 30 languages with perfect pitch.

The syndrome that robbed her of much has given her much: musical talents that have brightened her world.

Gloria Lenhoff, 48, is in Shawnee recording a CD with Sandra Meyer, associate professor of music at Oklahoma Baptist University. Lenhoff has Williams Syndrome, a condition that produces physical and cognitive abnormalities. But unique to the syndrome is an aptitude for music -- in Gloria's case, expertise that few people without the condition have attained.

"We see miracles almost every day," Dr. Howard Lenhoff, Gloria's father, said during a presentation at OBU Tuesday night. "There are peaks and valleys. The peaks are phenomenal."

Gloria will be in recital at Yarborough Auditorium in OBU's Raley Chapel at 7:30 p.m. today. The event is free and open to the public. She will sing pieces by Handel, Strauss, Verdi, Puccini and Mozart, as well as some spirituals and music in the languages of Arabic, Hindu, Japanese and French.

Gloria has more than 2,000 songs in her repertoire, her father said, but she has an IQ of 55 and reads at a fifth-grade level. It is part of the irony of Williams Syndrome, a condition that affects motor coordination, facial features, attention spans, visual-spatial abilities and intellect. Research has shown that all with Williams Syndrome have leanings toward music -- many with their voice, some on piano, drums and wind instruments, Lenhoff said. Few play stringed instruments because of their difficulty with motor skills, he said.

Gloria was born before Williams Syndrome was diagnosed, her father said. Their family experienced the difficulties that come with having a handicapped child, but without a name for the problem.

In 1961, Williams Syndrome was identified by New Zealand doctors. Several other diagnoses were made that year, and many similarities were discovered, Lenhoff said. All had heart problems, from simple murmurs to complex issues. They had high amounts of calcium in their bodies and shared what was described as an "elfin face look:" broad forehead, wide mouth, full lips, small chin, puffiness around the eyes and a small, upturned nose.

Other physical problems included joint limitations, abnormal walking, premature graying and an inability to handle food. Ninety-five percent had hyperacusis, in which sounds are painfully loud.

But there are many positive characteristics to Williams Syndrome people, Lenhoff said. They are friendly and talkative, have good long-term memories and are empathetic. Gloria is particularly at home performing in nursing homes because she seems to identify with people there, her father said.

One out of 20,000 people is born with Williams Syndrome, Lenhoff said. Cause of the condition has been traced to the No. 7 chromosome that is missing about 20 genes. Those genes produce elastin, a protein helps build heart muscles, lungs and intestines, he said.

Gloria showed an unusual knack for music as a child, but her parents initially thought it was part of a youngster's curiosity, Lenhoff said. The extent of her ability became apparent at age 13 when she participated in her bat mitzvah, her mother Sylvia Lenhoff said. Because of Gloria's condition, they wanted to keep the ceremony low-key. Someone taught her a short song to sing, and they held their breath.

"When she sang it, everyone was speechless," Sylvia Lenhoff said. "It was perfect. From then on, we knew we had to give her the best training possible."

Since then, Gloria has had weekly music lessons. She has a gift, her father said, but she also has worked hard at it, something that sharpens any musician's skills. It was difficult to find teachers willing to adjust their approaches, and their patience, he said. Gloria has been coached by a physical therapist, a prison teacher, college music majors and others.

Gloria has learned many of her songs by listening to a recording or taping her lessons. That technique has been used to learn how to sing in other languages, Lenhoff said. They ask native singers to record a song, then enunciate each phrase, leaving a blank space in time for Gloria to repeat. They sing the song again at the end of the tape.

"She's learned some songs in 30 minutes, and others have taken her a few days," he said.

Along the way, the Lenhoffs discovered that Gloria has absolute pitch, the ability to identify and/or produce notes without reference to other notes. Only one in 10,000 people in the general population has the ability, he said.

Gloria also plays the accordion, using three fingers on the keyboard because she cannot turn her arm enough to use all five.

Gloria has performed all over the world, from opera houses to the Grand Ole Opry to the Kennedy Center. She met OBU professor Meyer at a music camp for those with Williams Syndrome. Meyer has a niece with the condition and has taught at camps in Boston and Ireland. Their album features sacred music, a sort of "classical karaoke" with the accompaniment available on a separate track, Meyer said.

Through her work with Williams Syndrome, Meyer said she has seen people's joy at embracing a skill shining through deficiencies.

"People at the camps blossom and gain confidence," she said. "They are so supportive of each other and have such big hearts, without exception. It's a wonderful experience."

Sign Our GuestbookView Our Guestbook

Please send mail to williamssyndrome@insightbb.com with questions or comments about this web site.
For additional information about Williams syndrome, please send an e-mail to hlenhoff@uci.edu.
For contact with other Williams syndrome families --
In the USA: please send e-mail to info@williams-syndrome.org
Outside the USA: please visit our International Williams Syndrome Support Groups page for contact information.
Copyright © 2002 Williams Syndrome Foundation
Last modified: April 15, 2007