Countdown to Moebius Syndrome Awareness Day 2019

The Adventures of Moebius Martin
Martin Moves into a New Home

by Tim Smith

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.

On a warm sunny spring day not too very long ago Martin and his family packed up all of their belongings into a moving truck and headed on a cross country trek from San Diego California to Fairfax Virginia where their new home was. The trip was very exciting for the whole family. They got to see many wonderful places like the Grand Canyon and the Natural Bridge in Virginia. One night they roughed it by camping out in the open. The next night mom got pampered as they spent the night in a grand hotel. They took many pictures of their cross country trip. When they ran out of things to do or talk about they sang songs like "The old rugged cross", to keep themselves entertained.

After about a week of being on the road Martin was getting antsy to see the new house. After seven long years of sharing a bedroom with his brother Billy he was finally going to get a bedroom of his own. When he was a kid he liked sharing a room because Billy would always check the closets for monsters. Now at the age of seven he was nearly a man and knew there weren't any monsters in the closet. Finally he would have a place to put all of his treasures.

After what seemed like an eternity to a seven year old they had finally made it to their new home. Martin couldn't believe what he was seeing. His new house was perfect. He always dreamed of living in a house just like this one. As soon as he got out of the car he ran as fast as his little legs would take him to his dad, jumped in his arms and gave him a big hug.

His dad smiled and said, "I guess this means you like your new house Martin?"

A big half smile appeared on the right side of his face. "I LOVE IT DAD!"

A short while later Martin and his family busied themselves unloading the moving truck. Martin was mainly getting his own stuff but if something else was in the way he would get that also. Except for his sisters dolls. He certainly didn't want anyone to see him carrying those.

Martin's mom was the traffic director. She told everyone where to put the boxes and the furniture. She had a curious smile on her face. She was enjoying bossing everyone around but would never admit to it. As she was standing next to the porch steps telling her husband Charles where to put the dishes, a lady about her age and height with long flowing bright red hair walked up to her.

"Hi I'm Maggie Lewis your next door neighbor. Welcome to the neighborhood."

"Hi I'm Harriett Hensmen", said Martins mom as they reached and shook hands. She pointed, "The big guy in the house about to drop the dishes is my husband Charles. Over there carrying the guitar with the long hair is my son Billy. As you can see he wants to be a rock star. Sitting on the swing is my daughter Kate missing her boyfriend from California. The little girl carrying the teddy bear is my niece Carol. The boy with the matted hair carrying the box two times bigger than himself is my youngest son Martin."

Mrs. Lewis smiled as she spoke. "Martin is a cute name. I am very impressed at how he carries the boxes!" She had a puzzled look on her face.

Martins mom knew Mrs. Lewis wanted to ask a question so she helped her out. "Martin was born with a condition called Moebius Syndrome. We call him Moebius Martin because we want him to grow up and be proud of who he is. He doesn't mind when we call him that but he is still a little sensitive when others do."

"What is Moebius Syndrome?', asked Mrs. Lewis.

Martins Mom pointed to her oldest son. "Billy go in the house and get my purse for me. It's in the kitchen on the counter next to the sink." Billy hesitated for a moment and looked like he was going to say something. Then he went and got his moms purse and handed it to her. She ran her hand through his hair. "Thank you Billy!"


Martins mom fumbled through her purse until she came across some business cards she had stashed away in one of the pockets. She handed a couple of them to Mrs. Lewis.

Mrs. Lewis read what was on the card out loud. "The many faces of Moebius Syndrome! Interesting? I'll check it out!

"It's a very helpful website," said Mrs. Hensen. Whenever Martin is feeling down he looks at it and remembers he's not alone." She smiles at Mrs. Lewis "Do you have any kids?"

"Bart, my husband, and I only have one child. Freddie. Who is eight There aren't a lot of kids his age in the neighborhood to play with. I can't wait till he meets Martin. I know they will have a blast together."

"I'm sure Martin would like that", said Mrs. Hensmen.

"Good!", replied Mrs. Lewis. We'll I've got to get home and fix dinner. Bart and Freddie will be home soon from watching the minor league baseball game across town. See you soon!"

Once the truck was unloaded Martin spent the rest of the afternoon putting his room together. First he unpacked and put away all of his clothes. He put his pants, socks, underwear and pajamas in the dresser drawers. Then he hung his shirts and jackets up in the bedroom closet. Once he was done with the boring stuff the real fun started.

He unpacked his model airplanes and with Billy's help hung them from the ceiling using string. Then he put together his nascar raceway and hung some racing posters on the wall. Then he put together his race track and made sure it worked by racing the cars for a few laps. Afterwards his Dad helped him put his racecar bed together. Martin laid down on the bed to test it out. Just for a minute or two......................


For breakfast the next morning Martins mom made pancakes, sausages, and eggs for breakfast. Since Martin had slept through last night's dinner he was starving. He ate six pancakes covered with hot maple syrup, two eggs, and three pieces of sausage. His excuse for eating so much was that he was a growing boy.

As soon as breakfast was finished Martin tried to drag Billy out of his chair so they could go explore the neighborhood. Billy didn't want to have anything to do with it. He wanted to go back to bed.

Knock, Knock, Knock, Knock.
Martin ran barefoot to the door to see who is was. He waited for his mom to catch up. He knew he wasn't supposed to open the door to strangers. He looked through the window next to the door and saw a little boy with matted red hair. Martin wondered who he was and what he wanted?

Martin's mom opened the door. "Hi!"

The little boy gave her a big wave with his right hand. "Hello I am freckled Freddie and my mom told me a boy named Martin lived here and I want him to come out and play?"

Martin was nearly speechless kids always came to his old house wanting his brother and sister to come out but him. "Hi I'm Martin!" He waved his arm in the same way he had seen freckled Freddie do. He turned to his mom. "Mom please can I go out and play?" He tugged at her pants leg.

"Okay Martin but don't go in the street and stay near the house!" Martin was out the door like a rocket with Freddie following close behind. Mrs. Hensmen shut the door slowly as she watched the two boys run off together. Within thirty seconds she could hear them outside laughing and carrying on like they had been friends forever.

Mr. Hensmen got up from the table and joined his wife at the door. He put his arm around her waist. "Now that is a pleasant surprise!"

"Yes it is." replied Mrs. Hensmen as she wiped a tear from her eye. "I hope it lasts. Martin has had such a hard time making friends."

"I hope so too," said his dad. Together they walked back into the kitchen.

Martin and Freddie played all morning long. They were outside, then up in Martins room playing with the racetrack. Then outside again. They ate lunch together on Martins front porch. His mom fixed Martins favorite peanut butter and jelly sandwiches. How they managed to eat and talk at the same time I do not know. Freddie asked Martin to call him Freckled Freddie and Martin asked Freddie to call him Moebius Martin. Martin's mom overheard him saying it and she looked up and whispered "thank you". As soon as the boys were finished eating they were chasing each other around the front yard playing cops and robbers.

At around two o'clock in the afternoon Mrs. Lewis and her husband Bart knocked at the front door of Martins house. Mr. Lewis was carrying a covered square plate. Martins Mom and Dad greeted them at the door.

Mrs. Lewis took the plate from her husband's arms and gave it to Martin's mom. "I baked some yellow cupcakes with chocolate icing. I hope your kids can eat sweets? Consider them a housewarming gift. Plus we wanted to say thank you."

"We should be the ones thanking you", said Martin's dad. "Freddie is a great boy and we're very happy Martin has made friends with him so easily." He gestured for them to go into the living room. "Would you like to come in and sit down?"

Once seated Maggie Lewis spoke up. "To be honest with you, yesterday after Freddie saw Martin from a distance he was a bit hesitant about meeting him. My husband and I tried talking to him, but you know how kids are. He just isn't old enough to understand it all" She paused, "but later in the evening we decided to take a look at the website address on the card you gave us. Freddie was very impressed when he saw it. He couldn't believe Martin had a whole website dedicated to people with Moebius Syndrome. I'm not really sure if he understands it all, but he thinks it's cool! Which in his eyes makes Martin cool." She smiled. "Now he wants his dad to make a website for people like him. People who have freckles. He calls himself Freckled Freddie!"

Martins mom chuckled! " I know he introduced himself that way. It's very cute!!

"Very", replied Freddie's mom. "Oh and before I forget. When January 24th comes around next year I hope we can all celebrate it together?"

Mr. Hensmen smiled then spoke up. "I'm glad you were able to find information on the website that was helpful. We hoped introducing people to it would make it a bit easier for Martin. It won't always work and there are no simple solutions, but it is a good place to start." He cleared the lump from his throat. "Of course we will be delighted to celebrate January 24th with you."

To be continued....
Written by Tim Smith & Edited by Dawn Maitland!