Countdown to Moebius Syndrome Awareness Day 2019
We have some extremely gifted creative writers in our global Moebius syndrome community. Here are some of their stories. Click on the link to read the story.
There once was a boy who never smiled. His name was Matt Downer. But all the kids called him "Mad Downer," because they said he always looked mad. He never smiled at his mother or father. He never smiled to his friends. He never smiled when he was happy. And he never, never smiled when he poised for a picture. He just never smiled. He even hated the very idea of smiling. When his mother or father tried to get him to smile, Matt would shout "No!" When Matt’s friends asked him why he never smiled, he said, "Smiling is for losers. Why should I smile?" He never seemed to care that not smiling was making everyone around him sad.
Know how sometimes you get the feeling that you can’t do something your friends or classmates can do? I feel that way every day because I can’t smile. Let me explain.
I was born with Moebius Syndrome which was caused by a loss of blood when I was a developing baby. That loss of blood caused the nerves for my face to form the wrong way, and because of it, I cannot smile or move my lower lip very well. When you’re a teenager, or a grown up, you can’t get Moebius Syndrome, you have to be born with it. When you are born with Moebius Syndrome you could have one or more of the following features: clubbed feet, missing fingers and/or toes, crossed eyes, and you cannot smile.
Growing up all Jasmine wanted to do was play softball on the varsity team for her high school. She wanted to represent them on the field in one of the most important positions. Starting out as a freshman, she trained diligently with her mom, every single day after school before the season even started. When the softball season started, Jasmine was ready to show off her skills!
My face was different so obvious to see,
I couldn't hide how God had made me.
Born with crossed eyes that were soon mixed with glasses,
and a cracked smile for everyone who passes.
I wore the shoes i thought were so neat,
which helped to straighten my crooked little feet.
Doctors! Doctors, of one type or another,
Hand in hand I went with my mother.
To all my friends who wonder if it's okay to dream!
One of the positive things about having Moebius syndrome is that I have very vivid realistic dreams. it's like watching a movie play out in my head. Sounds and effects included. Only difference is: I'm in the movie.
Years ago when I first started spreading awareness about Moebius syndrome I received a few phone calls and emails from people saying, “hey Tim I think what you are doing is really great but aren’t you worried about people laughing at you for putting yourself out there? We know it happens!”
At this point in my life I don't worry about being laughed at. When I was a kid, and someone teased me or laughed at me I ran home crying to my mom. As a young adult when someone teased me I did my best to send them home crying to their mom. I've been bullied and have been a bully. Being able to see things from both sides of the coin has shown me many things more clearly.
I want you to imagine a little boy around 8 or so who has been undergoing a form of development. Every year the boy achieves something which was mentally incoherent the following year. From structuring to sentences to writing algebraic equations, the child is undergoing a rapid growth spur. However he is still enrolled in Special Ed courses. Many years past and the child still show severe signs of improvement although his syndrome is still evident his abilities are improving.
It was the end of a busy day at Wriggley’s Toyshop. Everybody had gone home and the great big green doors which guarded the toys inside had been tightly shut and locked.
Inside, the toyshop was covered in darkness. But all was not quiet as a faint whimpering noise could be heard. It was coming from one of the toy-shelves.
From the sales counter, of where he had been placed on display for promotional purposes, Policeman Pete switched on his torch. (Luckily for him batteries had been included!) "Who’s there?" He asked as he slowly swung the torch beam across the toyshop.
When no answer came Policeman Pete shouted into the darkness; "Identify yourself! Or when I find you I shall be forced to make a Plastic Policeman’s arrest!"
But still nothing.
On You Tube. Click on link!
Martin is a seven year old bright eyed boy with glasses and straight brown hair. He has a Mom, Dad, sister, cousin, brother, and a Persian cat named Tiger.
Martin is much like other boys his age but he has a rare condition known as Moebius Syndrome. He cannot blink his eyes or move them from side to side. He can only make a half smile on the right side of his face. He doesn't have any fingers on his hands but this doesn't stop him from doing anything.
“Hey you – hey weirdo!”
Martin didn’t even have to turn around and look, he knew that it was aimed at him.
“Hey, I’m talkin’ to you.” The voice said again. “Hey Star Trek, do you go home on the bus or does the Starship Enterprise just beam you up?”
Martin knew that the voice belonged to Harry Hoolihan, a boy who was in his English class.
Just then he felt a hand on his shoulder. “Just ignore him pal, he’s like that to all us ‘uncool’ types.” It was Freddie, the first new friend he had made while moving into their new house.
He looked over at Harry, who was surrounded by a group of his cronies who were laughing at his little joke.
If you would like to submit a story for publication send it to us at firstname.lastname@example.org.