Moebius Syndrome Awareness Day 2018! Here’s an Update to my life with Moebius as a new mom and still facing challenges with doctors and the general public.
I also have Moebius Syndrome. I have a much more mild version but I am cross eyed, I have an unusually shaped middle finger in my left hand and many people are very mean to me. I’m in the 8th grade and in summer camps, younger kids would throw water bottles at me, people in school come up to me and scream, call me creepy and a lot of other things. Although I’m not at the same physical level as certain people, I’m still very respected in my grade as I have grown to take leadership as a Student Rep in the whole districts school meetings and a a student of excellence. I love how you talk about this openly and please keep doing what you do. Thank you for shinning light on our Syndrome, you’re amazing. PS try acupuncture because it helped me a lot.
You have done a fantastic job on this video - I will be 70 in a few months and have lived with Moebius Syndrome for all those years. But I did not know the name Moebius Syndrome until I was 36 or 37 when my oral surgeon told me. Keep up your good work.
Was googling about this syndrome and chose your older video instead of Wikipedia article, this is good video cause it gives human perspective to this. I wish you all the best for your future.
I never, throughout high school, heard you talk so much or saw you smile often! I had no idea! Your smile is beautiful, though! So proud of you and the strength and courage you have for your little girl! Don't let anyone get you down! You are beautiful and amazing in so many ways! Your little girl will grow up with you as her role model, knowing never to give up on what she wants! I'm so proud of you for making these videos, and I can't wait to see more!
You are my HERO!!!! I think you are gorgeous and very smart. God keep on blessing you and your family. My grand baby was born with this condition. And thanks to your videos i know she is going to be just fine. Thank you for the video.
