Hello and Welcome to the Goldenhar Syndrome Support
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
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
For her this means, she has
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
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
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.