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What Apert Syndrome Means to Me

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Apert syndrome is a rare congenital syndrome that causes unusual development in the skull, face, hands and feet. It affects about an estimated one in 65,000 to 88,000 newborns, according to Genetics Home Reference, and the most notable physical features include webbed hands and toes, bulging eyes, an underdeveloped upper jaw and a sunken mid-face.

That’s the dictionary definition. Go on WebMD, eMedicine, MedlinePlus or any dictionary, and you can find a variation of the description. But for me, it goes deeper than that.

For me, Apert syndrome is a grind. It’s wondering why you get asked so many questions about your appearance. It’s wondering why everyone keeps staring and pointing at you as you walk by, doing an awful job at remaining subtle.

For me, it’s feeling like you want to give up. No more hospitals, no more surgeries — my one wish as a child was for someone to make all the pain stop. Cut the IV, cut the aching body parts and cut off the casts and bandages. It’s feeling like all the effort is a waste when the whole world seems to be against you. Why bother trying all the operations if you’re still going to get judged for who you are? It’s feeling like you want to please everyone every day, but they’re still not satisfied with you. It’s feeling like your friends don’t see you as much of a friend and more of a charity case. It’s heartbreak and doubt. It’s questioning your worth.

I’ve lived 20 years with Apert syndrome. I’ve had to grow up a lot quicker than anyone else my age. It’s a privilege and a chore. It’s walking around school, feeling like I could never compare to the pretty girls with perfect faces all the guys chase after. It’s wondering about the friends I do have and questioning what’s going on in their heads. Are they friends with me because they want to or because they feel bad for me?

It’s struggling with school and trying to get my grades up to par. It’s feeling invisible, watching as life passes around you and no one noticing you as much because they don’t have any regard for anyone different from them. It’s breaking down crying because three people I’ve known for a two-month time span are being nice to me, and I’m surprised when they say they actually like me. That’s how much insecurity consumes me.

In my eyes, Apert syndrome also means possibilities. It’s a second chance for transitional periods like going into middle school. It’s creating my own world where I meet friends who love me the way I am and see beyond my face. It’s waking up to the morning sun and having faith it’ll be a good day. It’s having strength to never give up hope, no matter how many bombs life throws at you.

It’s being considered a role model for everyone and getting reminded people are inspired by my journey. It’s being less concerned with how I look and more with how I act. It’s feeling even a bit of sympathy for the people who don’t share the same mentality. It’s becoming the “change you wish to see in the world” and showing my heart more than my body, patiently waiting for everyone else to follow my lead.

Apert syndrome is my call to the world. It’s me letting the world know it can knock me down as many times as it wants. But I haven’t given up yet. And I’m not planning to.

Vivi Zhang.1-001

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Originally published: November 17, 2015
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