DONOVAN: Lifting hearts with Down syndrome

Infants with disabilities can become happy adults — if protected

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“People are blessed in their own way. Teddy came in here and blessed us with his energy and his presence that day. Enjoy life, be yourself and play hard. Give it all you got. That’s Teddy. He’s a reminder to us all.”

Wouldn’t you like to have such words of affection and admiration said about you? They were from a major-league baseball player, Brandon Phillips of the Cincinnati Reds. As it happens, he said them about someone who has the genetic condition Down syndrome — Ted Kremer, who was 29 when the Reds made him their honorary batboy for a game on Aug. 17, 2012.

Ted was a big hit — pun intended — with everyone, and Reds player Chris Heisey said, “He’s always smiling, always joking, always having fun. Everybody likes being around somebody like that. He’s cool. I wish he’d come back more.”

The Reds did bring Ted back for a game the next April, and in a thrilling moment, outfielder Todd Frazier was able to hit a home run after Ted asked him to. Later that year, Ted got his own Topps baseball card, a virtually unprecedented salute to a nonplayer.

Stories like Ted‘s, and many more not necessarily as exciting but certainly just as heartwarming, reflect the reality that families of people with Down syndrome love them.

Research by Dr. Brian Skotko, co-director of Massachusetts General Hospital’s Down Syndrome Project, has shown that 99 percent of parents say they love their child; 97 percent of brothers and sisters say the same; and 97 percent to 99 percent of Down syndrome individuals say they are happy with their lives and that they like who they are.

Tragically, though, we know of another reality: A majority of babies who are diagnosed prenatally with Down syndrome, between 61 percent and 93 percent, according to a variety of studies from around the world, are aborted. Defenders of Down syndrome people ardently believe that this does not have to be. They say we need to respond to this type of difference and disability the same way we do with other conditions; namely, with more knowledge, understanding and compassion.

Advocates say we can do a better job for parents who receive a Down syndrome diagnosis. Sympathetic peer support about seeing their child as an individual who has a disability can help parents’ understanding, and so can telling them about positive experiences of raising Down syndrome children. Parents also need to be able to give fully informed consent to prenatal testing. Providing them with accurate, balanced and up-to-date information, including about the liabilities of testing, is essential. State and federal laws should require that parents be given this information.

More assistance and support for parents can come from expansion of prenatal nondiscrimination laws to cover Down syndrome infants so as to be consistent with other laws that protect disabled individuals. These laws would save babies from disability-selective abortions.

We need to eliminate the automatic preference of many medical personnel for aborting the babies. We also need to improve medical training in order to help future doctors focus on acceptance and love, and to avoid stereotyping Down syndrome babies.

Separately, another much-needed step would be increases in funding for research into Down syndrome so that this field can catch up with much more well-funded research into other genetic disorders. The disparity in federal funding is stark: Per-person spending on Down syndrome research and therapies runs at approximately $76 per person; for cystic fibrosis, the figure is $2,666 per affected individual. It is not a matter of spending less on the latter malady, but more on Down syndrome children.

We at the Charlotte Lozier Institute will release a major, new special report and position paper this week that goes into detail about these recommendations and more. This comprehensive review also features good news about the latest scientific advances and the hope they offer for innovative and effective treatments for children in the womb and afterward. Our report gathers public-policy proposals that will benefit parents and Down syndrome babies, children and grownups throughout life.

This brings us back to batboy Ted Kremer and other happy and fulfilled Down syndrome individuals like him. We could all learn a lesson from Rick Stowe, the Cincinnati Reds‘ equipment manager during Ted’s first game with the Reds in 2012. Mr. Stowe said about the Reds‘ team, “They all could tell that Teddy is a guy who never has a bad day. How can you not love a guy like that?”

Chuck Donovan is president of the Charlotte Lozier Institute, the education and research arm of the Susan B. Anthony List.

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