More than 20,000 Arizona children suffer from craniofacial deformities—facial disfigurements ranging from a cleft palate or mildly misshapen head to much more severe deformities.

“A craniofacial abnormality affects the entire family—even the siblings who have no deformities,” says Gretchen Perry, executive director of the Phoenix-based Craniofacial Foundation of Arizona (azcranio.com). The organization has provided programs and support to families facing these issues since 1990.

Parents receive emotional support and mentoring. Parents “help each other with concerns [ranging from] what kind of bottle is best to just knowing that someone else has been through this,” says Perry. CFA’s Happy Faces family support network helps families overcome the social isolation and loneliness they often experience. Counseling is available to siblings.

“It’s so beneficial to be with families in similar situations,” says Maria Karnafel of Phoenix. Her daughter, Maria Jean, was born with Goldenhar Syndrome, a congenital birth defect that involves facial deformities. Maria is now a thriving fifth grader. “As the years go by, it’s our turn to give support to others. It’s a give and take.”

Maria Jean enjoys having fun with other kids at the annual Happy Faces Retreat. “It helps her understand that it’s okay to be different,“ says Karnafel.

All parents want their children to be accepted and treated with respect at school. That’s why CFA provides a program called “Unwrapping the Package: Dispelling Myths About Unusual Appearances,” which was developed by AboutFace, an international organization that provides emotional support to individuals with facial disorders.

Each fall, board member and educational consultant Janet Miller (in photo) takes the program to schools across the state. Using props and an interactive video, students are taught to look beyond outward appearances and see the beauty within. “This program is all about tolerance and acceptance—not just for children with facial abnormalities, but for anyone who might look different,” says Perry.

This article first appeared in the December 2008 issue of Raising Arizona Kids magazine. All rights reserved. This material may not be published, rewritten, broadcast or redistributed without permission of the publisher. For more information, write to editorial@raisingarizonakids.com.