Moebius Syndrome Awareness Day 2019 

Daniel

​Daniel is an 11 year old boy with an animated personality and a contagious laugh. He loves creating video games, animations and funny videos. He hopes to one day become a video game maker and create games from the music to the graphics! He also enjoys hanging out with friends, his favorite game is tag. Daniel loves to tell jokes and come up with new puns, you could say he’s pretty Punny! Daniel’s favorite part of School is being a part of Hawk Squad one of the most important job is making sure everyone is included. He is extremely caring and goes the extra mile to make sure others around him are happy!

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Xavier 

Xavier Dean was born term May 16, 2018 on a beautiful day in Des Moines, Iowa. He is our first child and we had no idea that he would have any complications at birth. We spent many days in the NICU and this was for breathing difficulties, which in turn caused feeding problems.  At this time, the doctors diagnosed him with severe left-sided Poland Syndrome. Xavier’s left lung is 1/3 size as it should be, the right radius and some ribs are smaller/malformed, his heart is midline and some fingers on the left hand are conjoined. Physicians mentioned Moebius Syndrome a few times as Xavier suffered unknown facial paralysis and this was visible as he cried. The official diagnosis of Moebius Syndrome came after we were out of the hospital by an inspiring and caring developmental pediatrician who also specializes in genetics. It has been interesting to learn about each disorder, but yet hard to understand as we have found that not one child with Moebius or Poland Syndrome is alike.

He is now 8 months old and a little spitfire! Sitting, playing and laughing all of the time! We just love him to death and most of the time we forget that he has any disabilities.  Xavier is such a happy baby and as new parents, we are more than impressed with his progress each day rather than focusing on the fact that he may not have facial expressions.  While the future of his health is unknown, we are optimistic for Xavier and just want to spread awareness. Being in the health care field for 15 years, I have never heard of either one of these diagnoses.  Having a child with a rare disease definitely has had its challenges. However, what has made our lives easier is the support from our family, friends, co-workers, health care professionals and most importantly the Moebius Syndrome support groups. We cannot wait for our first Moebius Syndrome Awareness Day!

Huge thanks goes out to those who are spreading awareness for our “holiday hero”,

Erica, Andy, and Xavier Tinius.


Moebius Syndrome 









January 24 2019

If you would like to nominate someone to be a Moebius Syndrome Holiday Hero please send us their photo and a summary about them to info@moebiussyndromeawarenessday.org.