Goldenhar Syndrome Support Network

The Journey

Thanks to Rickie Gill, Will Eiserman, Kathy Kapp-Simon and Ann Ross for their efforts in developing The Journey. Each of the following sections can be viewed separately or in sequence with the links provided on each page.

Your child was just born with a facial difference

Finding the right team of professionals to care for your child

Preparing your child for surgery

Meeting friends and family for the first time

How and when do you talk with your child about his or her condition

How do you make sure your child is doing well in all areas of development?

Your child is starting preschool

Your child is going to school

Understanding Medical Procedures

The following links are from the Starlight Starbright website and will help you and your child understand these topics and reduce anxiety about the procedures.

Medical Imaging: Welcome to the Radiology Center

Understanding Our Incredible Blood

Spotlight on IVs

Additional Articles and Publications

Advice for Parents: Helping Children to Tell Peers About Their Difference

Starlight Starbright - Back to School for Teens