The Gregarious Brain

"They know no strangers but can claim few friends."

-- On people with WS from the article "The Gregarious Brain"

The article the WS world has been buzzing about made its debut on line today. As heartbreaking as this subject is to me, the article is beautifully written. If my child didn't have WS, I would be fascinated by this "genetic accident" from a scientific/curiosity standpoint. It's a truly bizarre syndrome. You can find the article in The New York Times tomorrow, but it is now available to read on line here.

There is also a video of Nicki, a 19-year-old girl with WS. Many of you have never seen someone with WS "in the flesh." In listening to her, the innocence that accompanies this syndrome is quite apparent to me. There are truly devastating cognitive disabilities that accompany WS, but they are often masked by near-normal language skills. If you don't have time to read the entire article, the video is worth watching. You can see it here.

People have told me since our diagnosis that I will someday be thankful our son is wired the way he is and wouldn't want him any other way. I do love Erik just the way he is. Does my heart break when I look at him struggling? Yes, and the pain is almost unbearable at times. There are days I seriously don't think I can stand one more second of this! I would never wish this upon any child or their family, and I still wish things were different. It's hard being thankful my life is so incredibly full because of Erik but at the same time cursing our circumstances, knowing the road ahead of our family is the most difficult one we will likely travel, especially for my sweet, innocent boy with a tender, vulnerable heart. One thing is going for us, though. The world is beginning to sit up and take notice of this group of individuals with some of the purest hearts on the planet.

I believe wholeheartedly there are angels in our midst.

No Singing the Blues

The following is an article I received from our dear family friends in Iowa. Thank you so much!

No Singing the Blues
By Fred Love
The Gazette

Article published: Jun 10, 2007

CEDAR RAPIDS Several audience members wept as Gloria Lenhoff sang a selection from the operatic masterpiece “La Boheme.”

A few minutes later, with an accordion on her lap, she wowed the spectators again with her take on Elvis Presley's rockabilly classic, “Blue Suede Shoes.”

Gloria, 52, a renowned classical singer with a repertoire of thousands of songs, has Williams syndrome, a rare genetic condition that causes severe mental disability.

She has an IQ of 55, a crystal-clear voice and charismatic warmth - a combination that stunned a nearly full lecture hall at Coe College's Hickok Hall on Saturday.

Howard Lenhoff, Gloria's father, explained between songs that many who have Williams syndrome possess extraordinary musical abilities.

To prove his point, Carol Malerich, 13, of Marion, who also has Williams syndrome, took the stage to give a solo piano performance. Carol has taken classical piano lessons since she was 3 and learns all the songs she knows by ear, said Leah Malerich, Carol's mother.

The Lenhoffs visited Coe as part of the college's annual alumni reunion held every June.

Howard Lenhoff, who received a chemistry degree from Coe in 1950, is a professor emeritus of biology at the University of California, Irvine, and an adjunct professor at the University of Mississippi.

The author or editor of 13 books, including “The Strangest Song: One Father's Quest to Help His Daughter Find Her Voice,” Lenhoff and two others were to be presented with Coe's Alumni Award of Merit last night.

Lenhoff said he encouraged Gloria to focus on music, where she knows she can excel, rather than focus on areas where her disability would hamper her.

“Take the positive things and get training in that and do it,” he said. “Don't try to be a jack of all trades.”

Gloria Lenhoff has taken professional voice lessons since she was 11, and she first picked up an accordion at age 12.

Since then, she has performed as a guest artist with the Los Angeles Opera and the Boston Lyric Opera and continues to perform at Opera Memphis.

“Whenever I perform somewhere, I say to myself that music is my first priority,” she said Saturday.