Frequently Asked Questions

 What is Goldenhar Syndrome: It is a syndrome in which someone is usually affected by underdevelopment of one side of their body. This  disability can have differing affects for each person. Every cause is different. Some people are born with heart conditions and others can be  missing an ear or an eye.

 

 How common is Goldenhar Syndrome: I was one in a million when I was born, and now it is one in every 3,000-5,000 births. It has  become more common over the years.

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 Do you know why Goldenhar Syndrome is caused: There are no answers for why Goldenhar Syndrome exists. Although there are speculated contributing factors that might play a role in how Goldenhar came to be.

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How many surgeries have you had in total: I have had well over twenty or thirty surgeries throughout my life. As far as I can remember, I had twenty-one surgeries although I've been told I've been through more by doctors and my parents.

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Why do you have a feeding tube: I have a feeding tube because I was born with half a jaw which has led to some difficulties where eating by mouth was not sustainable for me. I've been able to survive with a feeding tube and with eating by mouth whenever I am able too.