Tuesday, July 9, 2013

Fewer barriers constrain those with Down syndrome

Ski instructor Tim Norton was devastated when his daughter was diagnosed with Down syndrome shortly after her birth in 2006.
He envisioned her growing up tragically disabled, the years ahead filled with darkness.
But a chance encounter just a few months later changed his outlook on Down syndrome and the prospects for his daughter’s happiness.
While skiing near his home in Westford, Mass., a gifted teen skier with Down syndrome, Melissa Joy Reilly, glided past at the crest of a hill.
Norton had noticed her earlier but said nothing. “Melissa stopped in front of me and said, ‘Hello, how are you?’ I said, ‘Great. What a great night to be skiing.’”
And, just like that, his life changed.
“Without her even knowing it, without her even trying — it was quite remarkable — I got just the positive lift that I needed,” says Norton, whose daughter, Margaret, is now 7.

Face fewer barriers

Like Norton, many people are surprised to learn of the dramatic improvements in health and quality of life for people with Down syndrome.
Advocates feel a new urgency to spread the word about these advances as more women undergo prenatal tests for Down syndrome and other genetic conditions.
The lives of the 250,000 Americans with Down syndrome today are radically different from a generation ago, says Brian Skotko, co-director of the Down syndrome program at Massachusetts General Hospital.
People with the condition now live to an average of 60 years, says the National Down Syndrome Society. Just a generation ago, they lived to an average of only 25.
Many graduate high school. Some take college classes. Some get married. One in five have jobs, says pediatrician Kathryn Ostermaier, medical director of the Texas Children’s Hospital Down Syndrome Clinic.
And the best may be yet to come, Skotko says.

Happy how they are

Research by Skotko and others finds that life with Down syndrome is far happier than most imagine. Of more than 2,000 parents on the mailing lists of Down syndrome groups, only 4 percent regretted having a child with the condition.
Nearly 99 percent of people with Down syndrome say they’re happy with their lives, and 96 percent say they like how they look, the survey found. Among siblings, 88 percent say their brother or sister with Down syndrome has made them better people. There’s a chance the surveys paint an overly sunny picture, Skotko says, because people who belong to Down syndrome groups may be better off than those who lack such a connection.
Advances in Down syndrome treatment “need to be a part of prenatal counseling,” says Ostermaier, an assistant professor at Baylor College of Medicine. “As physicians, we’re supposed to give people accurate information so they can give informed consent” to any medical procedure.

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