It was a genetic specialist who gave them the diagnosis but didn't offer a lot of answers about the uncommon syndrome. He gave them a brochure for the foundation and from that Julie Humphrey found answers from others who had been there and could reassure her.

They referred her to the Turners, who are active with the foundation. When they met, she couldn't believe how much Karli looked like Alyssa.

Because she's only mildly affected, Karli is basically healthy, although she's had reflux issues. She's also had surgeries for a couple of hernias and had tubes in her ears temporarily to drain them. Her language is closer to that of a much younger child, and she understands better than she communicates. Like Alyssa, she's a sweet, loving child.

Karli is in a special-needs class at school and is thriving, although she's very quiet. She's "about half her age" in many ways, developmentally, but she reads mostly by sight and has an excellent memory.

Life — and the syndrome — keep delivering the unexpected, Julie Humphrey says. "Most of the time, you figure it out as you go. I don't anticipate independence for Karli. She's healthy. She will have a job with some support. She'll probably never drive."

The foundation has launched a campaign to find other children who have the syndrome, in hopes of providing information and services, which range from the support of other families affected by the syndrome to "ask a doctor" and more.

Additional information on CdLS is online at www.cdlsusa.org.

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E-mail: lois@desnews.com