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| For Parents New to Williams SyndromeWelcomeWelcome to Holland ( aka The Beauty of Holland)Dreams for DevinAnother Gloria Moment before Surgery(NOTE:All the links listed below open into a new window. To return to this page, please close the new window when you are through viewing the link by clicking on the 'x' at the top right of the window. Thank you.)Medical
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From Howard Lenhoff, father of Gloria, and Executive Vice President (Volunteer) Williams Syndrome Foundation Some of you may have been bewildered, to say the least, when your physician or geneticist told you "Your child has Williams syndrome." She probably told you much of what you already know: that your child does not sleep well, that he can’t hold his food, and that he is having a difficult time doing many things that others baby do. But there is so much more to Williams syndrome, some difficult things and some beautiful things, such as their loving and sweet nature and their love for music. Right now, however, you are probably thirsting for more information about Williams syndrome and how you can get help for your child. You also may be finding some of the information available either too oversimplified or too technical and voluminous. Although we have tried to make this web page comprehensive and easy to navigate through the use of the outline, website map and search engine, it is often difficult to know where to start. That is why we decided to put together a special section for you as you become acquainted with Williams syndrome. After a while you will be able to search this and other web sites for the specific information you may want, such as the location of Williams syndrome clinics or information on the various music camps. We have organized this section in the following manner:
Remember, you can always get help or directions by writing to: WSF Webmaster at williamssyndrome@insightbb.com or the WSA at info@williams-syndrome.org
Welcome to Holland
(aka The Beauty of Holland)
The important thing is that they
haven't taken you to a horrible, disgusting, filthy place,
full of pestilence, famine, and disease. It's just a
different place.
One of the most memorable of many such moments with Gloria occurred in the fall of 1991, Gloria was entering the operating room to prepare for the mending of a broken hip caused when she was hit by a moving auto. To boost her spirits before the eleven hour operation, Gloria’s brother, Bernie, walked besides Gloria as she was wheeled into the operating room on a gurney, and, accompanying himself on his guitar, sang folk songs for Gloria. By the time they reached the operating room, Gloria was harmonizing her brother! On March 27, 2006, fifteen years later, Gloria was a little nervous as she entered the surgery wing of an eye clinic to have a cataract removed. We had only recently learned that she had been completely blind in her left eye for the past half year. While Sylvia, Gloria’s mother, was trying to reassure Gloria that the surgery would be a simple painless process, I went to the desk to sign Gloria in. I was surprised when the receptionist asked for Gloria’s identification card with her photo. We had not brought it assuming that all we needed were Gloria’s medical insurance cards. So I reached into my wife’s sack of papers and snacks, and pulled out a couple of Gloria’s CD’s, “Religious Classics for Soprano” and “Gloria Lenhoff and Friends,” both of which had a photograph of Gloria on their respective cases. The receptionist smiled, and within 20 seconds, three nurses gathered around the desk to say they thought that they had recognized Gloria. One had taken her children to see a concert Gloria gave at the University of Mississippi and had purchased one of her CDs there. She said her kids had then recognized Gloria on the Discovery Health Channel when it aired just a few weeks ago on March 13, and they called their parents to watch. The other two nurses recognized Gloria from articles about her in Oxford’s Eagle and Jackson’s Clarion-Ledger respectively. Another patient, overhearing the chatter, said that she remembers reading last fall the feature article in the Memphis Business Journal about Gloria performing in Opera Memphis. Noticing the flurry of activity, the anesthesiologist came over to say that he too thought he had recognized Gloria. He proceeded to tell us that his niece had seen Gloria on 60 Minutes, and from that program learned that her son also had Williams syndrome. They called to Gloria and said that they were happy to have a celebrity as a patient. Minutes later the smiling Gloria pranced into the operation room, chatted with her admirers, and 40 minutes later came through the operation smiling. Was she pleased that the operation was over? Or did she love the attention.? Probably both, because before they released her, they asked her to sing one song, which she did – the Afro-American spiritual, In Bright Mansions Above. Another “Gloria Moment.”
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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.orgOutside the USA:
please visit our
International Williams Syndrome Support Groups page for
contact information.
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