Advocate helps give disorder new light
Down Syndrome diagnosis

By McClatchy-Tribune Information Services

Published: October 6, 2008

CHICAGO — Every few weeks, Angie Picchi, a 28-year-old with Down syndrome, and her mother, Linda, stand up before another group of doctors.

Together, they launch into what they refer to as "The Talk.” Part public-relations push, part sensitivity training, they touch on the stereotypes and low expectations associated with Down syndrome.

Then they flash pictures on a screen from Angie Picchi’s life. Here she is dressed in a sparkling leotard, gliding across the ice at a skating rink. There she is piloting the family boat across a Midwestern lake. At the end of the presentation, Linda Picchi asks her daughter, "Angie, are you sad you have Down syndrome?” And Angie Picchi, a chatty young woman who fields questions on such subjects as bullying and boyfriends, replies with a smile: "No, Mom. I have a great life.”

Meet Angie Picchi, nicknamed the "Myth Buster,” an unofficial spokeswoman for one of the most aggressive campaigns in decades to change the public perception of Down syndrome. The effort received a boost when Alaska Gov. Sarah Palin cradled her son Trig, a 5-month-old with Down syndrome, onstage at the Republican National Convention.

With so many unknowns, families say the decision to have a child with the disorder can feel like a leap of faith. Most women — studies report as many as 70 percent to 90 percent — terminate the pregnancy after learning they are carrying a fetus with the condition.

To be sure, life with Down syndrome can be far from easy. About 40 percent of children with the disorder are born with a heart defect. Many struggle with speech and life skills. Most will require lifelong support, a challenge as parents age.

But many parents and advocacy groups think balance is sometimes lacking in the information couples receive during a diagnosis. Their campaign, they maintain, is not part of a debate about abortion — it is an attempt to tell prospective parents about the potential, not just the problems, of people with Down syndrome.

"There are more challenges raising a child with Down syndrome, but there are also significant joys,” said Nancy Goodfellow, 34, of Naperville, Ill.

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