It's a genetic disorder when some of the bone in the face don't form. Like for instance cheek bones, lower jaw joints, or ears. ( that's the basics for me)
The way I've heard it explained is that in the womb the body actually fight against it self because it thinks that it already has the bone to make the cheek bones an other stuff. So in the end they don't get made at all.
There are simple to severe cases. The simple ones don't need hardly any fixing but the more severe cases get the most surgeries and everything. My case is severe but not too severe. One of the most severe cases is in Florida and her name is Julia I think. She is amazing!
In my case I have to have a trach and a g-tube which are a breathing tube that helps me breath and a feeding tube which I hardly don't use anymore but it helps me get all the nutrition that I need when I need it. And it's helpful for when I don't want to take medicine by mouth! Yes I have had many surgeries to try and help but sometimes they don't help. Some do help but some don't. There is always that risk with any surgery. That is the frustrating part for me. I've had a total of 32 surgeries so at but there are more to come.
I'm strong because I have no choice. If I don't then I believe I would just crumble. I have days when I just want to be done but I get over those with the help of my friends and family. Friends are the most important thing to me. I hope they know that! Well I think that's it for this post if you have any questions feel free to ask!
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