My Sweet Evan

My Sweet Evan
On my way from Heaven

God delayed my trip that day

He said that I was special

and then sent me on my way

but not before he kissed my ears

He left his Blessed mark

to carry with me here.

He whispered in my ear right then

that he loved me without a doubt

and then he closed my ears up tight

so the whisper won't get out

-Author Unknown

Thursday, February 18, 2010

Coming To Terms

I have had alot of people ask about Evan's condition. I wanted to include this on the post so that we could spread awareness about Evan.
Evan has Goldenhar Syndrome and Bilateral Microtia/Atresia.
Goldenhar Syndrome or AKA Hemifacial Microsomia is a disorder where the patient has facial features that are incompletely developed on one side resulting in ear, eye and jaw deformities.
Microtia is a congenital deformity of the outer ear. It affects boys more than girls and the right side is the most commonly affected side. It affect 1 in 8000 globally but ranges wildly depending on the ethnic group in question. In our case, it affects 1 in 20,000.
Atresia refers to abscence of the external ear canals. It is most frequently isolated but usually occurs with a syndrome.

Right now, my baby does not realize he is different. We have experienced the stares, comments and other children making fun of his ears. My hope is that we raise awareness and continue spreading the word about "EARS FOR EVAN" so that he will never have to feel that he is different. So if you have read this please become a follower on this post and pass this along to your friends and family.

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