Down Syndrome Children

* I read with interest Paul Jacobs’ account of the the Human Genome Project’s recent report that it has decoded the genetic information contained in the 21st chromosome, thus setting the stage for a host of possible new therapies for Down syndrome (May 9).

As the father of a 9-year-old daughter who has Down syndrome, such news leaves me ambivalent at best. Somehow, I cannot help but wonder whether these and similar research efforts are merely an attempt to “fix” something that is not broken. True, the world is not always a welcoming place for my daughter, Anna, and children like her. To some, she is a “problem” to be “solved,” or something “broken” to be “fixed.”

To my wife and me, our family and the many people who have come to know and love Anna, she is neither, of course. Instead, she is simply one of the most remarkable people we have ever known, a child who contributes by her very presence.

Your article quotes Dr. Julie Korenberg of Cedars-Sinai Medical Center asking rhetorically, “How many IQ points would it take to give large numbers of children with Down syndrome the ability to function in normal society?” Her answer: “not many.” As Anna’s father, I’d ask instead how much human compassion would it take to give large numbers of children with Down syndrome the ability to function in normal society? How much understanding? How much acceptance? How much love? The answer would be probably be the same: not much.

BOB WELLS

Raleigh, N.C.