But she knew he wasn't growing fast enough and one night she measured his head. I started freaking out,'' she says. The next day, her pediatrician, Faye Roberts, saw Samuel, immediately suspected Cornelia de Lange, and sent Samuel to Dr. Martinez. Dr. Roberts also is Andrew's doctor. Cornelia de Lange occurs in somewhere between one in 10,000 and one in 30,000 live births.
Many patients live into adulthood.
Dr. Walks says, so rare that researchers receive no government money. So the money must come from private sources. The Walks and the Davises, therefore, have organized a golf tournament for Nov. 14 in hopes of raising money to send to the Cornelia de Lange Syndrome Foundation in Connecticut. They also are seeking corporate sponsors. Researchers may be close to a blood test to see whether other members of a family carry the gene, which apparently is not inherited.