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Goldenhar Syndrome Support Network Society
Copyright 1998
All Rights reserved.
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Webmaster
Site Last updated:
January 22, 2006

 

Hello and Welcome to the Goldenhar Syndrome Support Network.

I started this organization to fill a gap in the support system. When my daughter was born in Golden, British Columbia, Canada in July of 1995, I had no idea what Goldenhar Syndrome was, and even less an idea of how to get more information about it.

Now, ten years later my goals are coming together, I have set up two mailing lists and am in the business of providing Support and Information to others like myself. I do all of this for free... Why? You may ask.

I was scared that I wouldn't be able to provide the information that Sara, my daughter, would need when people started asking her the questions about her condition.

My search for information started with my mom posing as someone working for a doctor's office to gain access to a local Medical Library ... if she hadn't posed as someone working for a doctor... you guessed it... we would have had to pay for the measly bits of information we were able to get.

I believe that this information is essential for us to have, and I don't believe that we should have to pay for it to insure that we get the proper medical care.

As you probably have figured out already, my daughter has Goldenhar Syndrome.

For her this means, she has Hemi-Facial Microtia, which is a missing left outer ear, except for a few skin growths where her ear tried to grow. She was also born with a Pouce Flottant Thumb, her right thumb was missing the metacarpal, so it was just held there by skin and constricted muscles and tissue. Early X-rays also show some abnormalities in her vertebrae, between her shoulder blades. She has since had  an MRI that revealed that she is at risk for a Tethered Cord. Overall, I find nothing out of the ordinary with her, but I was fortunate in being brought up around disabilities, so I have an easier time in overlooking such differences.

I hope that you are able to use the information contained in this site, and that it is able to help you in your quest. If you have any questions or suggestions, please don't hesitate to contact me.

Hugs of Support and Understanding.
Barb Miles
support@goldenharsyndrome.org