Goldenhar syndrome

We are actively collecting and updating new stories. We welcome you to check back often, and to share your story. If you or someone you know has a story to share, please contact us to add your story.

Share Your Story

Select a Category to View Stories

Click on the above dropdown to view more.

Most Recent Stories

Jessica and Johnny: Goldenhar syndrome

Listen to Story

While Jessica was pregnant with her son Griffin, she and her husband Johnny were informed he had a heart complication- Tetralogy of Fallot. It wasn’t until Griffin was born that they realized there were further complications. Griffin has been diagnosed with Goldenhar syndrome. He has scoliosis, facial differences, heart complications, and a limb difference. Griffin is very proud of who he is, he is extremely positive, and advocates for himself.

Read More