A Leap of Love

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By Michael Alison Chandler
Washington Post Staff Writer
Sunday, November 9, 2008

Jonny and Madeleine, the eighth and ninth children in the Curtis family, were born 54 weeks apart but grew up in many ways like twins. Best friends from the beginning, they learned to walk and sound out words together. But Madeleine's development soon outpaced her older brother's.

Looking ahead, Barbara and Tripp Curtis worried that Jonny, who has Down syndrome, would be alone as his siblings grew up and left home. And so they adopted Jesse, Daniel and, finally, Justin. All three have Down syndrome.

Now the four brothers, ages 8 to 16, share a bedroom decorated with posters of SpongeBob SquarePants and a framed picture of Jesus in their sprawling Loudoun County house. They also share a love of the Beatles, the Everly Brothers and Special Olympics basketball.

For many parents, a diagnosis of Down syndrome can be overwhelming as they face the likelihood that the child will struggle to live independently and will require intensive medical, financial and social support. Most prenatal diagnoses of Down syndrome lead to abortion.

Yet almost 200 families are on a waiting list to adopt a child with Down syndrome in the United States. Others are seeking to adopt such children overseas. Many of those interested in adoption, such as the Curtises, have a child with the genetic condition; some are special-education teachers or motivated by religious beliefs or idealism.

This month, President Bush signed into law a bill meant to help families who confront questions about Down syndrome or other disabilities. It promotes initiatives to give new or expectant parents up-to-date information about the conditions, as well as referrals to support services. It also authorizes the government to help create a national registry to connect birth parents with people who want to adopt a child with Down syndrome.

In 2005, Brian Skotko, a resident physician at Children's Hospital Boston, surveyed more than 1,000 mothers of children with Down syndrome. He found that information mothers got from doctors was often "incomplete, inaccurate or offensive," he said. "Rarely was the option of adoption mentioned" to those diagnosed prenatally, he said.

The closest thing to a national Down syndrome adoption registry is managed by Robin Steele, a mother of 12, including four adopted children with the disability. She works from her Cincinnati home, sharing an office with a 13-month-old foster daughter with shaken baby syndrome.

Her oldest daughter, now 37, was put in a group home as a toddler under the assumption that "she would not be adoptable" because of Down syndrome. Steele adopted the girl and later helped hundreds of other families do the same. In 1983, she helped arrange three adoptions; last year, she was involved in more than 100.

An Atlanta mother, Andrea Roberts, has helped arrange more than 100 international adoptions in two years. Her Web site, http://reecesrainbow.com, focuses on children with Down syndrome, listing page after page of toddlers from Serbia, Ukraine and other countries where children with mental disabilities are often put in orphanages or mental hospitals.

"What a precious, lively, glowing with happiness little boy! Andrey is facing institutionalization very soon," reads the profile of a 3-year-old boy with Down syndrome who needs help for a heart condition. "He will bring the greatest joy to any family who adopts him!"

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