The author’s daughter, Esprit, who has a rare chromosomal disorder, trisomy-18. (Daniel T. Willingham)
by Daniel T. Willingham
“I’m the father of a child who has a rare chromosomal disorder, trisomy-18. It affects about one in 5,000 births and leaves children with profound mental and physical disabilities. Life expectancy is harrowingly brief; some 90% of affected infants don’t see their first birthday.
“There are many reasons why it’s important for people to know about this syndrome — to encourage more research, advance better policies for families coping with it, to ‘raise awareness.’ But when I consider my daughter Esprit, I’m interested in a specific kind of awareness, the kind that helps people feel comfortable interacting with her. Medical details and statistics don’t put anyone at ease around a severely disabled child. But a parent’s perspective might.
“Chances are, you and your children will encounter Esprit or a child who is similarly disabled at a store, or in a park.”
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