Goldenhar Syndrome: Shaikha’s Story
In the seventeen years of Shaikha’s life, she has spent an exceptional amount of time undergoing medical procedures. “By the age of 11, I already had 19 surgeries,” she explains. “I've had 25 surgeries in total.”
Patient stories
Goldenhar syndrome Patient Stories
Goldenhar Syndrome: Emily’s Story
Born with tetralogy of Fallot and Goldenhar syndrome, Emily has endured dozens of surgeries in the past 14 years, and her mission is to teach kindness and acceptance.
Goldenhar Syndrome & Von Willebrand Syndrome: Aidan's Story
Aidan was born with Goldenhar syndrome and Von Willebrand syndrome, two rare genetic conditions that need expert medical management. He receives care from The Children's Hospital of Philadelphia at CHOP Specialty Care Centers in New Jersey.