So I read today that Moebius affects 2 to 20 per million births. That is rare. You know, I actually think it is kind of cool to be able to say that I have something so rare. You have to find the positives and not dwell on the negatives. Moebius is so rare that a lot of doctors even have not heard of it. I find myself educating people on it pretty frequently. They always find it interesting.
I think that standing alone with Moebius (or any other rare condition) is difficult. You may think that you are the only one who has to go through the struggles. I am extremely blessed to have a whole extended Moebius family. I may only see them once every two years but I am so fortunate to be able to communicate with everyone on a daily basis. It makes my life so much better and I know that I am not alone, and more importantly, I have people that I can go to that go through the very same struggles that I do. I have people who understand what I go through. What more could I ask for?
They’re my family and I am so grateful for them. Love you guys!