Moebius Syndrome Awareness Day: January 24, 2016
When I was born, they had no idea what I had and diagnosis took nearly a month. I had a feeding tube, home nurses, I don’t know how many surgeries. I stopped breathing and choked numerous times. The doctor said I would never eat orally and would need a trachea, but my mother said no. She took me off a medicine because I was throwing up, and later found out babies died because of that medicine. But after 2 or 3 years I had the feeding tube out and pretty much lived a well life.
In 2008 I chose to do the facial surgery. I understood that it would be very drastic, but I really wanted to be able to smile. It was supposed to be like 8 hours and something went wrong — it turned out that one side didn’t take. So here I am with a one-sided smile LOL. But I can close my mouth all the way, and that improved my speech by a ton.
In elementary school I was really popular and didn’t really have any bullying — people understood what I had and just looked at me being an outgoing and crazy person.
I hear all these stories about people with Moebius and how they always get bullied and it kind of surprises me. Seventh and eighth grade school was still pretty much the same — there was a lot of drama and I had some bullying, but I always stood up for myself. My mom always told me, “Don’t be ashamed of who you are because you are an awesome person — if someone pushes you down you just get right back up and always keep your chin up.” She really is an amazing mom. <3
We missed the Moebius Syndrome Conference in New Jersey, but we went to the one in Pennsylvania. It was amazing! I really wanted to go there to be a role model for kids young and old. It was a major thing because it really made me realize how lucky I truly am: I have all of my limbs and I can walk; I can close my mouth and talk decently well. And I have an amazing support group — I have a lot of friends. It was definitely an eye opener.
If you are reading this and you need some advice or anything please contact me: Halls.austin287 @ gmail.com