Moebius Syndrome – Allie Johnson: My name is Allison Johnson and this is my journey so far on this earth. The day I was born the doctors diagnosed me with Moebius Syndrome. Moebius has affected my life in positive and challenging ways. I can’t speak as clearly as an average person and this has been something I struggle with a lot, but like with everything I just persevere to get my message across. I also do not eat orally, I am fed through a g-tube and although it’s not always the most convenient thing, I just have to for my health. Moebius has set up many barriers for me for example because of my speech I have struggled socially because I don’t want to explain, why I was different for fear they wouldn’t understand.
I am really blessed to have the opportunity to have a conference in the states. This conference has made me come out of my shell because it showed me you shouldn’t hide behind the mask your syndrome has given you, you should let your personality shine bright. The adults that I have met at the conference are normal successful people with families that are happy with life. And this gives me hope that I can have all of those things and makes me work harder to achieve the goals I want in my life.
I will be graduating this June from high school. And plan on going to UW- Green Bay to study Public Relations. And my dream is to get a job in NYC and to creatively write for my job. Ill admit that I am scared that Moebius will hold me back. But i know that whatever obstacle comes at me, ill take it head on.
My advice for people who think that nothing good will come of this syndrome, that its not true. I wouldn’t be the strong, confident person i am today if I didn’t have Moebius. And I am sooo blessed to have met all the wonderful people because of Moebius. Live Laugh Love.