Thom Horsey and Karen Manning Horsey recorded their conversation in Richmond, Va.
The Horsey Family
Thom Horsey and Karen Manning Horsey with their daughter, Liddy.
Thom Horsey and Karen Manning Horsey with their daughter, Liddy. The Horsey Family
As with other syndromes, individuals with Cornelia de Lange Syndrome strongly resemble one another. Common characteristics include:
- Low birthweight (often under five pounds)
- Slow growth and small stature
- Small head size (microcephaly)
- Typical facial features include thin eyebrows which frequently meet at midline (synophrys), long eyelashes, short upturned nose and thin, downturned lips.
Liddy Horsey was born with Cornelia de Lange Syndrome, a rare genetic disorder. She didn't reach her ninth birthday — but she changed her parents' lives. Thom Horsey and Karen Manning Horsey recently spoke of how grateful they are.
Born on Oct. 10, 1997, Mary Lyndell Horsey — or Liddy — spent more than three weeks in the hospital before coming home.
The Horseys' doctors told them that if their daughter didn't walk by the time she was 24 months old, it would likely mean that she never would.
But at 28 months, Liddy started walking, holding on to the coffee table for help.
"As usual, Liddy did things on her own time schedule," Karen says.
"She started to take her steps, and she was so happy," Karen remembers. "And that's when I knew to throw out those stupid milestone books. And that Liddie would just be Liddy."
Karen decided she would simply enjoy her daughter — and enjoy being her mother.
"You can't live your life measuring your child against the norm," she says.
Liddy's condition kept her from speaking. But while his daughter might not have talked, Thom says, she expressed plenty.
"She was always laughing, and giggling. It doesn't strike me as, that was anything that was missing, in a way," Thom said, recalling his daughter's expressiveness. "God, she laughed so much."
"That's the thing I miss the most," Karen says. "Without speaking, how her soul could fill the house, and you just knew she was there."
"In eight years, she profoundly changed who you and I are," Karen told her husband, "and how we live our lives. If she was sitting here, what I would say is, 'Thank you for making me your mom. It was the greatest experience I'll ever have.'"
Diagnosed with lymphoma in July of 2005 — a condition not related to CdL Syndrome — Liddy died at age 8, in December 2005.
Produced for 'Morning Edition' by Katie Simon. The senior producer for StoryCorps is Sarah Kramer.