Only Few people understand facial disfigurement. Betsy Wilson set out to change that through her support and information network, Let’s Face It (www.faceit.org), which provides a broad range of resources for individuals whose faces are disfigured for any reason—burns, cancer, accidents or craniofacial conditions—and those who care for them. The Foundation for Faces of Children is one of those resources.
“We need to tell people the way it is,” says Wilson, a child life specialist who has cared for children in health care settings throughout the U.S. “Let’s Face It and the Foundation for Faces of Children each do that. We tell people they are not alone, and we encourage parents to pass along what they have learned. I feel we’re marketing hope.”
Wilson knows the impact of craniofacial conditions. Her daughter was born with craniosynostosis, a condition that causes a baby’s head to develop abnormally due to the premature closing of the seams between the bones. Later, at age 39, Wilson lost part of her face and jaw to cancer.
Facial disfigurement, whether temporary or permanent, presents a complex seesaw of emotions, says Wilson, who had to stay strong while raising her three children. “I learned to ask other people to help me,” she says.
“I was very lucky that my parents always valued me for who I was. People who think they are their face have a harder time. We need to educate the world to value the person behind every face. When you meet someone with a facial disfigurement, whether that person is a newborn or adult, look them in the eye and smile at them.”
According to Wilson, hope begins with self-help, something parents need to utilize when a child is born with a craniofacial condition. “The thing on the minds of many parents is that their child who is different will have a harder time in life,” she says.
That’s where the craniofacial community, and especially the Foundation for Faces of Children, comes in, says Wilson. “It’s important that we hear each other’s stories. Linking parents together is a simple yet powerful concept.”
Wilson, who lives in Bellingham, Washington, is a long-time fan of the Foundation. “I admire the work they do, including their videotape,” she says. “They’re one of the best.”
For more information on craniosynostosis, click here.