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Last August, when Republican Gov. Sarah Palin of Alaska was introduced to America as John McCain's running mate, she, in turn, was introducing America to a person not seen much in America anymore, a baby with Down syndrome. As Gov. Palin gave her acceptance speech at the Republican National Convention and the cameras panned the audience for the usual shots of the candidate's family, they caught an unforgettable scene: the governor's seven-year-old daughter, Piper, carefully holding her five-month-old brother, Trig, as she licked her hand and lovingly smoothed the infant's hair. The endearing image said loud and clear that this child was a precious and cherished member of the Palin family.

Some members of KIDS gathered at the NRLC office before heading out to the March for Life.

Tragically, the great majority of babies who are diagnosed with Down syndrome while still in the womb are never welcomed into a family. Of those parents who are told their unborn child has Down syndrome at least 90% choose to abort the baby.

The enormity of this crisis led Eileen Haupt and Leticia Velasquez, who both have daughters with Down syndrome, to work together to challenge the misinformation that often leads a mother to abort her child diagnosed to have Down syndrome. As Haupt said, "The one thing that prenatal testing cannot tell you is the unspeakable joy that your child with Down syndrome will give you."

Calling their endeavor "KIDS"--for Keep Infants with Down Syndrome--they organized a group of more than 40 family members and friends of children with Down syndrome to attend this year's annual March for Life in Washington, D.C. After the March the group met with Rep. Cathy McMorris Rodgers of Washington, who also has a son with Down syndrome. The KIDS group spent an hour discussing the policy of the caucus as well as the state of affairs of advocacy for children with Down syndrome.

Some members of KIDS gathered at the NRLC office before heading out to the March for Life.

Rep. Rodgers announced the formation of the Congressional Down Syndrome Caucus in May 2008. Its mission is to educate members of Congress and their staff about Down syndrome; support legislative activities that would improve Down syndrome research, education and treatment; and promote public policies that would enhance the quality of life for those with Down syndrome. At the launch of the caucus Dr. Bill Mobley, a Stanford researcher, explained that the neuronal circuits in people with Down syndrome are all present but don't work properly. For example, the inhibition circuit is too strong and thus limits learning and memory. He pointed out that breakthroughs in treating Down syndrome will transfer to treating similar diseases in people without Down syndrome.

"We're not just asking what our country can do for people with Down syndrome;" Mobley said, "we're asking what studies of people with Down syndrome can do for our country and the world."

Members of KIDS join the January 22 March for Life to s upport the right to life of children with Down syndrome. Photo by Ron Setran of Youth With a Mission Metro New York.

Haupt was drawn to the pro-life movement 10 years ago when her daughter, Sadie, was born with Down syndrome. She now serves on the board of the Vermont Right to Life Committee and is the alternate delegate from Vermont to the National Right to Life Board of Directors. On her family's life with Sadie, Haupt says, "The experience is kind of like receiving a gift you didn't want and don't want to open, but ends up being one of the greatest gifts you've ever received. You can't believe God would love you that much, and you want to share the joy with the world, but words fail you."

Haupt describes Sadie as "a loving, happy, and confident girl with a great sense of humor." Like any child, Haupt says, Sadie has her moods, but they are short-lived. "She can be very stubborn, which has both negative and positive implications; she has a lot of perseverance. She reads and has basic math skills, and she is a good speller. She has a great memory."

Velasquez's daughter, Christina, also has Down syndrome, but enjoys the life of a typical six-year-old. Christina attends an inclusive program in her local public kindergarten and by Thanksgiving Christina had already surpassed the goals set for her for the year. Her aide wrote to her parents, "Christina has truly brought new meaning to my life. I have learned so much knowing her."

Melissa and Neil Sloan with their son, Eddie, were just one of the many families meeting at the NRLC office before the March for Life.

Velasquez notes that raising a child with Down syndrome has its own challenges, but also brings its own rewards. "Sometimes [her other two daughters] complain when I ask them to help get Christina dressed or take time to help her wash her hands for dinner because it is more work raising a child with special needs. However, I have seen them grow more patient and tolerant of her mistakes and less critical if they see someone different than them."

Velasquez writes for several publications, including the National Catholic Register and Faith & Family Magazine. Her recent article published in the NCR titled "Down, Hero Dad, and Palin" reported on the passage in fall 2008 of the federal Prenatally and Postnatally Diagnosed Conditions Awareness Act, sponsored by Sen. Sam Brownback and Sen. Edward Kennedy.

The bill, signed into law by President George W. Bush, aims to promote programs to give new or expectant parents the latest information about Down syndrome or other disabilities and to give them referrals to support services. The law 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.

This law is not just feel-good window dressing but could really help parents overcome the negative information they are often given at the time of diagnosis and opt, instead, for life. A November 9, 2008, Washington Post article cites a 2005 survey of 1,000 parents of Down syndrome parents by Brian Skotko, a resident physician at Children's Hospital Boston. Skotko reported that the information mothers received from doctors was often "incomplete, inaccurate or offensive."

Further, he said, "Rarely was the option of adoption mentioned" to those diagnosed prenatally.  The bleak outlook given prospective parents does not match the day-to-day reality of those raising children with Down syndrome. According to the National Association of Down Syndrome, these children have mild to moderate disability but "it is important to note that they are more like other children than they are different." Furthermore, currently almost 200 people are waiting to adopt a child with Down syndrome; many of these people already have experience with special needs children.

Rep. Cathy McMorris Rodgers of Washington state, who formed the Congressional Down Syndrome caucus, met with members of KIDS on January 22. Photo by Ron Setran of Youth With a Mission Metro New York.

It is especially important to get accurate information to parents at the time when their child is first diagnosed and the parents are feeling overwhelmed. Even such a staunch pro-lifer as Gov. Sarah Palin has admitted that coming to terms with Trig's condition when it was diagnosed before he was born was "very, very challenging." When Trig was born, however, Gov. Palin's husband Todd said, "We shouldn't be asking, 'Why us?' We should be saying, 'Well, why not us?'"

The day of Trig's birth, Gov. Palin wrote in an e-mail to family and friends: "Many people will express sympathy, but you don't want or need that, because Trig will be a joy…Children are the most precious and promising ingredient in this mixed-up world…Trig is no different, except he has one extra chromosome."

Haupt and Velasquez both believe that there is growing momentum behind KIDS. "It may be that the lack of knowledge on the joys of living with a child with Down syndrome is being overcome recently, thanks to the candidacy of Sarah Palin, Rep. McMorris Rodgers and the Congressional Down Syndrome Caucus, and the grassroots efforts of parents like ourselves," said Velasquez. "We sense renewed interest in children with Down syndrome, as evidenced by the National Institutes of Health's new guidelines for research and the increased number of articles out on Down syndrome which I see every day in my Google Alerts. They're up threefold since Sarah Palin."

By letting people know about the reality of raising a Down syndrome child, Haupt and Velasquez hope KIDS will help persuade mothers not to abort their unborn babies. "I thought that special needs children were born to saintly mothers," said Velasquez, "but now I know that they make us better people, by the difficulties which we overcome, and their example of unconditional love."