It's hard to tell if Olivia Hale is nervous or excited until she starts speaking. Because of a rare congenital neurological disorder, the almost 9-year-old has no facial expressions. She does, however, have a voice, and a mission; to make others see "my smile comes from inside my heart."

Olivia addressed her fellow third-graders at WO Intermediate on January 24 2012 in honor of Moebius Syndrome Awareness Day. She recited her life story and was drawing visitors to www.manyfacesofmoebiussyndrome.com/Olivia by the next day, thanks to her teacher, Tlara O'Malley.

"At first I didn't kow if I would be brave enough to do it," Olivia said. "When I learned it was not going to be the whole school, I felt more confident." Her confidence was also boosted by the support of teachers and students who wore purple for her special day. Olivia and her mother, Laci Tincher, passed out 150 plastic purple awareness bracelets to the crowd as thank you for their support.

Olivia's story, written by her mom, recalls an excited delivery room, filled with well-wishers and family. However, almost immediately after her birth, Olivia was rushed to NICU. The cord had wrapped around her neck, causing a retinal hemorrhage. But there was more. It was soon discovered that Olivia's eyes didn't move left to right, nor could she cry or nurse. Even after four days of extensive testing, the doctors didn't have any answers except to try a Heberman Feeder - a special bottle that her parents had to learn to squeeze into her mouth.

When Olivia was six months old, a pediatric neirologist at Children's Hospital in Houston was finally able to diagnose the Moebius. This disorder can strike any 12 of one's cranial nerves, but Olivia's case is fairly contained to her sixth and seventh nerves which affect eye sight, facial muscles and nerves. About 2 to 20 people out of one million will be born with this.

"Even after finally being diagnosed, my family would not let that get in my way," Olivia read. "They just pushed me to continue to do my best. With all the therapies and hard work. I finally learned how to sit by myself when i was nine months old. Although I was a little behind others, I learned to crawl at eleven months, and walked by fifteen months. It wasn't until after my first birthday that I was able to start eating solid foods. Eventually I had three eye surgeries to help my eyes get straight, but I still cannot look side to side. Also, I had to get caps on my baby teeth because the enamel didn't form like it should have."

Today Olivia continues a form of therapy she fell in love with at three years old. Every week, she can be found at Windridge Therapeutic Equestrian Center where riding horses has helped her with coordination and muscle control, according to her mom. Olivia also enjoys dancing, twirling, and participating in plays at ArtsView Children's Theater in Longview.

At the urging of WO Elementary music teacher, Alisha Kimbley, Olivia has performed in "When I Grow Up." "The Littlest Pumpkin in the Pumpkin Patch." The Tortoise and the Hare," and "Arf."

"I think it's helped me slow down my speech and talk clearer, especially when I get up in front of people," Olivia said.

Laci said a string of therapy from physical to occupational to speech to vision has been the norm since they first brought Olivia home. "It''s been like a whirlwind," she said. "But to me, every day is a normal day. I don't look at it any differently. It's just something you do as a parant."

She is proud that Olivia does what other girls her age do, from playing softball to jumping on the trampoline - Olivia refuses to let anything hold her back.

"She want's to do everything," Laci said. Olivia is also an honor student and a strong reader. "Physically, I believe she has mild case."

One of the on going challenges is protecting Olivia's eyes. Because she can't blink much.she wears a watch that vibrates every two hours to remind her to use eyedrops. Her parents also apply an eye ointment ever night to keep her corneas from drying out, which could cause blindness. Outside she always wears sunglasses and regular eyeglasses help correct vision problems in the classroom. The Tinchers have also learned in the last week that they are not out of the woods concerning tuture eye surgeries.

"Our doctor explained that these types of surgery (to correct strabismus) will be an ongoing thing for her, like having you tires rotated," Laci said.

Laci, her husband Mak and Olivia are planning to attend the 10th Moebius Syndrome Conference in Philadelphia this summer as a means of support.

"We are going to go to some classes and meet other people," Laci said. "I want Olivia to mke friends around her age so the can e-mail and keep up with each other and talk about what they're going through."

Laci admitted the future "just hit me in the last month" as she was preparing for Olivia's speech. as she was researching and reading other parents stories, she realized how far they had come, and how much further they have to go.

"There's different phases of worrying," Laci said. "I was worried about her as a baby when they sent us to the hospital. I was worried that she wouldn't be able to sit up or walk. She was really floppy then."

Today, eating still gives Olivia fits since she can't completely close her mouth. She has also recently been fitted for an expander to help widen her palate. But overall, the support of her family has been her real boost.

When Olivia was younger, her grandparents Jack and Paula Hale, along with Laci's parents Marcel and Brenda Munn, took turns watching her while Laci worked. Today Olivia also spends time with her new set of grandparents, Jerry and Debra Tincher.

Along with learning the therapy exercises, her caregivers also read to her and play music.

"I think that's why she's so smart. Because we all worked with her," Laci said. Olivia's favorite performer is Andre Rieu a classical violnist from Poland who she's seen perform live on three different occasions.

Olivia ended her speech that day by thanking her "cheering section" for "telling me that anything is possible as long as I never give up."

Her mom said she hoped Olivia's story also teaches.

"I wanted her classmates to know that (people with Moebius) have normal intelligence, just like you. They also have special talents. They enjoy everyday things just like you do. They play video games, ride bikes and do sports," Laci said. "I really encourage the kids to see that you can't judege a book by its cover."

 www.manyfacesofmoebiussyndrome.com/olivia

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When people stare at his son, Caleb, Donnie Downs doesn’t get angry. He uses the opportunity to educate them about the syndrome that affects his son’s appearance and his behavior.

“It was hard and awkward in the beginning,” Downs said. “But if somebody stares at him, I tell them about it. Most people who have a special-needs child are more than willing to talk about the issues with their kids. People need to know that these kids — though they appear differently — are the same as other kids.”

Born with rare disorder

Caleb, 7, was diagnosed with Moebius syndrome when he was two weeks old. Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the sixth and seventh cranial nerves, preventing facial movements. Children and adults with the syndrome can’t smile, frown, suck, grimace or blink their eyes and are unable to move their eyes laterally. About 30 percent of children with Moebius syndrome are on the autism spectrum.

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REGINA -- With faces that appear mask-like — a fixed stare, unblinking eyes, and an absent smile — people with Moebius Syndrome are often mistakenly taken for being unfriendly or rude.

But Robbie Curtis knows her daughter Cassie is anything but, and it’s part of the message she hopes to spread during the second annual international awareness day for the extremely rare congenital neurological disorder.

“She’s just like part of the gang out here,” Curtis said of her 12-year-old daughter’s interactions with her schoolmates and neighbours in Bethune. “We’ve never put her in a bubble.”

The disorder results in facial paralysis due to underdevelopment of the sixth and seventh cranial nerves, which control lateral eye movement and facial expression. In some cases, as with Cassie, there are further complications. Unable to swallow, the Grade 7 student is tube fed and breathes with the help of a ventilator at night and for an hour during the day. Despite club feet that required surgery and put her in a wheelchair, she learned to walk and even played baseball. She also plays drums although there are challenges with her hands.

“She’s my little hero,” said her mother.

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Tim Smith jokes that he has a fantastic poker face.

He laughs about it, but it’s true. Opponents sitting across any card table from the 47-year-old Culpeper resident will only see Smith’s blank expression, revealing no hint of the hand he’s dealt.

It comes naturally.

In general, Smith’s face remains stoic whether he’s gambling or not.

He was diagnosed with Moebius Syndrome at the age of 3 and has learned to cope with his condition as he tries to educate the public about the uncommon disorder through his website manyfacesofmoebiussyndrome.com.

This syndrome, a rare neurological disorder typically identified at birth, has paralyzed Smith’s face, preventing him from being able to display all of the typical expressions. Because of this disorder, he’s unable to smile, frown, grimace, or move his eyes laterally. And his speech is impaired.

“I want to get the information out,” said the Alexandria native who’s president and founder of the Many Faces of Moebius Syndrome website. “The key is to make people aware and to educate them. But it also goes beyond Moebius Syndrome. It’s about anybody who has a rare condition. The more we know about people, the more we understand.”

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Tim Smith stood over the grave of a baby girl who had the same unusual condition he has—and wondered why their lives turned out so differently.

“I was supposed to die when I was a kid, but I was spared and she wasn’t,” Smith said. “Why did I deserve to live?”

It was a clarifying moment for the 48-year-old Culpeper County man. He decided to dedicate himself to educating others about Moebius syndrome, an extremely rare neurological disorder.

The syndrome is pronounced “mo-E-be-us,” and Smith and others born with it suffer from facial paralysis. They can’t smile or frown, laugh or grimace, blink or move their eyes from side to side.

Smith’s facial nerves are the only ones affected, but the syndrome also can cause limb deformities such as club feet, along with respiratory problems, speech disorders and visual impairments.

The disorder is one of more than 7,000 rare diseases and is marked by unknowns.

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Our son Ryan smiles with his heart because he is unable to move his facial muscles. Most of the time, a lack of smile can be mistaken as a sign of unfriendliness or being unapproachable but in reality people with Moebius Syndrome wear their smiles broadly across their heart.   Click Here to read the full article.

This is a news video the BBC made with Abby and Riley Ryan. Click here to see the news video. Click here to read Riley's story.

A mother has spoken of her heartache on discovering that her son suffers from a rare condition that means he can’t blink or smile.

Charlene Crawford, 37, found out fouryear- old Dillon suffered from Moebius Syndrome, a congenital disorder affecting facial expressions, when scans during pregnancy revealed he couldn’t move his face.

When Dillon was born he was immediately put into intensive care and fed through a tube for six months.

As a result of his condition, not only is Dillon unable to blink or smile but he also suffers from a club foot, speech impediment and learning difficulties.

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This is a news story and Video about The Harms family and their son Ozzie. To read the news story and see the video click here. To learn more about Ozzie click here.

This is the 2012 Moebius Syndrome Awareness Day Wrap Up I wrote which appeared in the Culpeper Star! Click here to read the story.

Logan was born with no smile. At the age of 1 he was diagnosed with Moebius Syndrome. It is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. A small thing which most people take for granted.

In October 2011, Logan was chosen along with 2 other children, to receive a facial reanimation operation. This is a very long and tricky procedure. Facial reanimation consists of one or two microsurgical procedures that involve connecting a specific nerve in the face from a transferred functional muscle taken from the leg. The nerve serves as an energy source while the muscle acts like a motor to create the motion needed to smile. Prof. Psaras from Greece is one of only a select few surgeons in the world skilled to perform this complex surgery.

As a person I can explain to you the experience that we had, but as a Mother I can never explain the emotions that went along with it. How do you explain to someone what you feel when your only child is taken to surgery at 7 in the morning and by 5 that afternoon, you find yourself sitting in front of the “Do not cross” line waiting for any news. And when you receive the news that it will still be another 2 hours, your heart breaks and you ask yourself again if you did the right thing?

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PURPLE shirts, shorts and even a cake – youngsters at a Morley-based childcare centre donned the colour to help educate others about Moebius syndrome.

Celebrating the annual international awareness day for the rare neurological disorder this week, kids at Huggy Bear Child Care got into the spirit by all things purple on Tuesday.

But the event was even more special as families got to learn a bit more about one of the centre’s children, Jack Lawrence (5), who was born with the condition.

The syndrome affects cranial nerves, leaving a person unable to move their faces or eyes laterally.

Respiratory problems, speech and swallowing disorders, visual impairments, sleep disorders and weak upper body strength may also be present.

Jack’s mother, Linda, said he had never seen his condition as a setback, but as an opportunity to show others being different does not matter.

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Five-year-old Emma McRae doesn't smile or frown.

She has Moebius syndrome, and is unable to show any facial expressions.

She makes up for that with enthusiasm and charm.

"Because of facial paralysis, many with Moebius syndrome are assumed to be dumb or unfriendly. That couldn't be farther from the truth," said Megan McRae, Emma's mother.

"To not be able to smile back, you have to make up for it in personality, which my daughter definitely has."

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We see them plastered on Christmas Cards, soccer player buttons and school pictures: the toothy, wide smiles of a child. But for an energetic, precious Detroit Lakes baby, a smile will be something he will never know. That's because 8 month old Ryan Larsen was born with a rare syndrome that doesn't allow him to blink his eyes or smile.

Tucked in the north woods of Becker County in a cozy log cabin, the noisy gurgles and rosy chunky cheeks of Ryan Larsen make his parents smile. Since Ryan's birth last June, Nikki and James Larsen of rural Detroit Lakes have been caught up in a medical whirlwind.

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Click Here to see the partial story as it appears on the Central Virginia Website.

Here is the Complete Story copied from the Central Virginia written by Brian Cain.

Jayden Schoenig is a typical four-year old boy.

The energetic and inquisitive child enjoys running and playing with his siblings and his family's newborn puppies, and he loves doing things with his hands.

He paints, draws, plays with building blocks and showcases his dexterity.

For instance using only one hand, Schoening can pick up a penny off of any flat surface, which is no small feat for a four-year old who is all thumbs-literally.

Schoening has Moebius Syndrome-a rare neurological birth defect-which resulted in him being born with without half of his hands.

“See,” the boy said after pressing the flat part of his hand-where his fingers would have been-onto the penny and then lifting it high above his head. “It's sticking with my hand.”

And like any other four-year-old, Schoening is excited about attending school for the first time this fall.

The outgoing child said he wants to build towers,draw pictures of flowers, learn to write his name and ride the school bus. “I think mommy's more scared about him going to school than he is,” said his mother Melissa Zummo.



“Why you going to be scared?” Schoening asked his mother.

Zummo told her son that she had never been away from him before, which drew another “why?” from the young boy.

“Because you're my baby,” Zummo said.

There was no change in the outward expression on the boy's face, but there was no mistaking his feelings as he erupted into laughter.

“I'm not a baby,” Schoening retorted. I'm a big boy.”

The inability to smile, blink, and move his eyes laterally are some of the dominant characteristics of Moebius Syndrome.

According to the National institute of Neurological Disorders and Stroke, part of the National Institute of Health, Moebius is caused by the absense or underdevelopment of the sixth and seventh cranial nerves-which control lateral eye movement and facial expression-and those born with the disorder often experience physical deformities caused by problems with other cranial nerves.

Schoening also has a clubbed left foot and crossed eyes-he has had several surgeries on each to help correct the problem-and he is missing half of his right foot, which is developed to the ankle and heel.

It's clear-while watching Schoening run around in the family's back yard or picking up a penny off the table-tant the boy has adopted to his physical condition.

But what is also clear is that Zummo's biggest concern about her son entering kindergarten at Thomas jefferson Elementary School this fall is his emotional well being.

“I know how mean kids can be,” Zummo said. “I'm worried he will start to feel ashamed of himself.”

The 34 year old motherof seven said that she already witnessed first-hand what could be in store for her son.

Zummo said she recently heard a child call Shoening a name.

“I don't think he heard it, but it upsets me,” Zummo said. “that makes me not want to send him to school.”

But Zummo is hoping that a friendship she developed with Timothy Smith, founder of The Many Faces of Moebius Syndrome, will help her son build up his confidence and raise public awareness about his condition.

The 47-year old Smith started a Web site and Facebook page to connect the Moebius community three years ago.

Smith was born with Moebius, but said little was known about the disorder at the time.

“I was raised that if you have problems, you just deal with it,” Smith said. “I grew up thinking I was alone.”

The Culpeper resident found out that he wasn't alone after being diagnosed with the syndrome while he was in his 30's.

He said that more than 140 families have made connections through his facebook page and that he is aware of at least four other Virginia residents, including Schoening, that have Moebius.

Zummo said that she connceted with Smith online after she bought a computer to research the syndrome two years ago.

“I had never talked to anyone about it until then,” she said. “I always felt, I guess, responsible for Jayden being the way he is. I felt bad.”

She said genetic testing revealed that her son's condition was not passed on through her genes and Smith said the cause of Moebius hasn't been determined.

Zummo said that her connection with Smith and others in the online community has helped her and her son deal with his disorder.

“He has met people like him and he knows he is not alone, “she said.

Last Year, Schoening met a Fredericksburg teenager who also has Moebius.

“Wen he saw that she had a hand the same way as him, it really helped him, “Smith said.

“This hand,” Schoening said, as he raised his right hand in the air.

But although the four-year-old is learning to cope with the disorder, Smith echoed Zummo's concern about teasing and bullying in school.

“I experienced a lot of it until I was about nine years old,” Smith said.

He said that the problem subsided after he gegan forming relationships with the other school children.

But Zummo said she is worried that the teasing could be worse for her son because of his hands.

“Despite his obvious disability, he can do more with his hands and feet than most people could,” Smith said. “I just hope that the public school system does more about the teasing now than they did back then.”

In 2011, the Louisa County Public School system adopted the Olweus Bullying Prevention Program-a national training program designed to reduce bullying in schools.

Dr. Deborah Pettit, school superintendent, said that the school system is making a concerted effort to prevent bullying.

“We take is seriously,” Pettit said, “and there is disciplinary action for students who do.”

The superintendent added that counselors and teachers do a excellent job of integrating students with physical differences into the classroom.

“As long as he's happy, I'll be happy,” Zummo said of the upcoming school year. “I think he'll like it.'

To help make Schoening's transition into Kindergarten easier on him and his classmates, Zummo and Smith are planning an April event in Louisa.

The hope that the event-which will afford Schoening's future classmates the opportunity to meet him and learn more about his condition prior to the new school year-will also helpraise public awareness of the disorder.

Smith has also organized a 2^nd annual Moebius Syndrome Awareness Day on January 247 2012.

The event marks the birth of Paul Julius Mobius, the German professor who first diagnosed the disorder in 1888 and Smith and Zummo hope that people will support their cause by wearing purple.

To learn more about Moebius Syndrome and the challenges facing those with the disorder, visit www.manyfacesofmoebiussyndrome.com