The video reminds us that, yes, raising awareness about Moebius Syndrome is of course about the children and adults who have it, and all that they do; but don't forget too, it is also the parents who can be the unsung heroes about whom we sometimes forget.
And then also, please met Moebius hero Zayne Herron. Zayne is attending middle school now. Her mother worried about what would happen to her there. But on MSAD, her school really turned out to support her.
I especially liked this from the article--see what one of Zayne's 11 year old classmates said about all this:
"Eleven-year-old Laynee Shirkey wore purple jeans because she wants other kids her age to understand that just because someone may look different doesn't mean "they are really any different than anyone," she said.
Shirkey knows that sometimes people with Moebious Syndrome get teased.
"I would just say to them, 'What if that was you'," she said."
Now that's raising awareness.
Read more about it:
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Woodward, Okla. —
When 13-year-old Zayne Herron was born, her mother Emilee, knew something was wrong.
"She was born with a cleft palate and her jaw was set back and she just had a lot of feeding problems and other problems," Emilee Neagle said.
But otherwise, the pretty, young girl who was so easy to get along with was just as bright and normal as any child her age.
It would be a whole six years, her mother said, before there was even a name for what had caused so many surgeries and continued to make it nearly impossible for her daughter to smile or register emotion.
Moebious Syndrome is a rare disorder, Neagle said. The syndrome causes paralysis of the facial muscles that control facial expression.
Friday was National Moebious Syndrome Awareness Day and in Woodward Middle School, students there couldn't be more aware.
At t certain times, the school ground looked like a Barney convention, as children, teachers and staff all donned the signature purple t-shirts, inscribed "I Smile For Zayne".
"Wow, this has just been a really emotional day," Neagle said. "I just had no idea people would support here this way."
Neagle said she began the day by running to the t-shirt shop to get two or three shirts because she wanted some people to be wearing the purple shirts on the day the syndrome was recognized.
"I just had no idea that the staff here (at Horace Mann where Neagle teaches) and so many students at school with Zayne would be wearing the shirts today," she said.
Eleven-year-old Laynee Shirkey wore purple jeans because she wants other kids her age to understand that just because someone may look different doesn't mean "they are really any different than anyone," she said.
Shirkey knows that sometimes people with Moebious Syndrome get teased.
"I would just say to them, 'What if that was you'," she said.
As classes let out on Friday, a sea of purple spilled out of the doors and onto the school yard where some purple people got onto the bus, while other purple clad walkers made their purple way home.
Watching them from the sidelines was purple Woodward Middle School Assistant Principal. Sarah Hall.
"I wore it because it is a chance to support Zayne and really also as a way of educating people about Moebious Syndrome," Hall said.
Moebious Syndrome is a condition that is present at birth, according to Neagle.
It is thought to possibly be caused, she said, by a lack of oxygen to the brain while the nerves of the face are being formed.
The condition results in a lack of facial expression, inability to smile, grimace or blink their eyes. Some cannot move their eyes laterally.
Some children have difficulty sucking and swallowing, causing feeding difficulties, especially when they are infants, Neagle said.
"It's just so rare," she said. "Like one in a million children have this."
It wasn't until a chance meeting with a family she knew whose son, Kash McFall of Leedey, was diagnosed with Moebious syndrome, that Neagle began to finally know there was a name for what her daughter had.
"They gave us this pamphlet and when we looked at it, it fit exactly all of Zayne's symptoms," Neagle said.
Neagle said the idea of her daughter growing up and going onto middle school terrified her.
But she said Zayne was brave and always wanted to participate in events and in every way possible, be a normal child.
"I was worried about it the day I dropped her off at middle school because she wasn't going to be at school with me where I could watch out for her," Neagle said. "But you know, she is so brave and then, when she got there, there was this group of kids there and they have always taken care of and protected her and watched out for her since day one."
In all, Zayne Herron has had 19 surgeries to help correct the problems associated with Moebious Syndrome.
Today, she lives a normal, active life and enjoys her friends who aren't afraid to stand out in a crowd for the benefit of their best friends. - See more at: http://www.woodwardnews.net/local/x1647918062/Students-teachers-join-I-Smile-for-Zayne#sthash.jkRtnESK.dpuf
"She was born with a cleft palate and her jaw was set back and she just had a lot of feeding problems and other problems," Emilee Neagle said.
But otherwise, the pretty, young girl who was so easy to get along with was just as bright and normal as any child her age.
It would be a whole six years, her mother said, before there was even a name for what had caused so many surgeries and continued to make it nearly impossible for her daughter to smile or register emotion.
Moebious Syndrome is a rare disorder, Neagle said. The syndrome causes paralysis of the facial muscles that control facial expression.
Friday was National Moebious Syndrome Awareness Day and in Woodward Middle School, students there couldn't be more aware.
At t certain times, the school ground looked like a Barney convention, as children, teachers and staff all donned the signature purple t-shirts, inscribed "I Smile For Zayne".
"Wow, this has just been a really emotional day," Neagle said. "I just had no idea people would support here this way."
Neagle said she began the day by running to the t-shirt shop to get two or three shirts because she wanted some people to be wearing the purple shirts on the day the syndrome was recognized.
"I just had no idea that the staff here (at Horace Mann where Neagle teaches) and so many students at school with Zayne would be wearing the shirts today," she said.
Eleven-year-old Laynee Shirkey wore purple jeans because she wants other kids her age to understand that just because someone may look different doesn't mean "they are really any different than anyone," she said.
Shirkey knows that sometimes people with Moebious Syndrome get teased.
"I would just say to them, 'What if that was you'," she said.
As classes let out on Friday, a sea of purple spilled out of the doors and onto the school yard where some purple people got onto the bus, while other purple clad walkers made their purple way home.
Watching them from the sidelines was purple Woodward Middle School Assistant Principal. Sarah Hall.
"I wore it because it is a chance to support Zayne and really also as a way of educating people about Moebious Syndrome," Hall said.
Moebious Syndrome is a condition that is present at birth, according to Neagle.
It is thought to possibly be caused, she said, by a lack of oxygen to the brain while the nerves of the face are being formed.
The condition results in a lack of facial expression, inability to smile, grimace or blink their eyes. Some cannot move their eyes laterally.
Some children have difficulty sucking and swallowing, causing feeding difficulties, especially when they are infants, Neagle said.
"It's just so rare," she said. "Like one in a million children have this."
It wasn't until a chance meeting with a family she knew whose son, Kash McFall of Leedey, was diagnosed with Moebious syndrome, that Neagle began to finally know there was a name for what her daughter had.
"They gave us this pamphlet and when we looked at it, it fit exactly all of Zayne's symptoms," Neagle said.
Neagle said the idea of her daughter growing up and going onto middle school terrified her.
But she said Zayne was brave and always wanted to participate in events and in every way possible, be a normal child.
"I was worried about it the day I dropped her off at middle school because she wasn't going to be at school with me where I could watch out for her," Neagle said. "But you know, she is so brave and then, when she got there, there was this group of kids there and they have always taken care of and protected her and watched out for her since day one."
In all, Zayne Herron has had 19 surgeries to help correct the problems associated with Moebious Syndrome.
Today, she lives a normal, active life and enjoys her friends who aren't afraid to stand out in a crowd for the benefit of their best friends. - See more at: http://www.woodwardnews.net/local/x1647918062/Students-teachers-join-I-Smile-for-Zayne#sthash.jkRtnESK.dpuf
When 13-year-old Zayne Herron was born, her mother Emilee, knew something was wrong.
"She was born with a cleft palate and her jaw was set back and she just had a lot of feeding problems and other problems," Emilee Neagle said.
But otherwise, the pretty, young girl who was so easy to get along with was just as bright and normal as any child her age.
It would be a whole six years, her mother said, before there was even a name for what had caused so many surgeries and continued to make it nearly impossible for her daughter to smile or register emotion.
Moebious Syndrome is a rare disorder, Neagle said. The syndrome causes paralysis of the facial muscles that control facial expression.
Friday was National Moebious Syndrome Awareness Day and in Woodward Middle School, students there couldn't be more aware.
At t certain times, the school ground looked like a Barney convention, as children, teachers and staff all donned the signature purple t-shirts, inscribed "I Smile For Zayne".
"Wow, this has just been a really emotional day," Neagle said. "I just had no idea people would support here this way."
Neagle said she began the day by running to the t-shirt shop to get two or three shirts because she wanted some people to be wearing the purple shirts on the day the syndrome was recognized.
"I just had no idea that the staff here (at Horace Mann where Neagle teaches) and so many students at school with Zayne would be wearing the shirts today," she said.
Eleven-year-old Laynee Shirkey wore purple jeans because she wants other kids her age to understand that just because someone may look different doesn't mean "they are really any different than anyone," she said.
Shirkey knows that sometimes people with Moebious Syndrome get teased.
"I would just say to them, 'What if that was you'," she said.
As classes let out on Friday, a sea of purple spilled out of the doors and onto the school yard where some purple people got onto the bus, while other purple clad walkers made their purple way home.
Watching them from the sidelines was purple Woodward Middle School Assistant Principal. Sarah Hall.
"I wore it because it is a chance to support Zayne and really also as a way of educating people about Moebious Syndrome," Hall said.
Moebious Syndrome is a condition that is present at birth, according to Neagle.
It is thought to possibly be caused, she said, by a lack of oxygen to the brain while the nerves of the face are being formed.
The condition results in a lack of facial expression, inability to smile, grimace or blink their eyes. Some cannot move their eyes laterally.
Some children have difficulty sucking and swallowing, causing feeding difficulties, especially when they are infants, Neagle said.
"It's just so rare," she said. "Like one in a million children have this."
It wasn't until a chance meeting with a family she knew whose son, Kash McFall of Leedey, was diagnosed with Moebious syndrome, that Neagle began to finally know there was a name for what her daughter had.
"They gave us this pamphlet and when we looked at it, it fit exactly all of Zayne's symptoms," Neagle said.
Neagle said the idea of her daughter growing up and going onto middle school terrified her.
But she said Zayne was brave and always wanted to participate in events and in every way possible, be a normal child.
"I was worried about it the day I dropped her off at middle school because she wasn't going to be at school with me where I could watch out for her," Neagle said. "But you know, she is so brave and then, when she got there, there was this group of kids there and they have always taken care of and protected her and watched out for her since day one."
In all, Zayne Herron has had 19 surgeries to help correct the problems associated with Moebious Syndrome.
Today, she lives a normal, active life and enjoys her friends who aren't afraid to stand out in a crowd for the benefit of their best friends.
Eleven-year-old
Laynee Shirkey wore purple jeans because she wants other kids her age
to understand that just because someone may look different doesn't mean
"they are really any different than anyone," she said.
Shirkey knows that sometimes people with Moebious Syndrome get teased.
"I would just say to them, 'What if that was you'," she said. - See more at: http://www.woodwardnews.net/local/x1647918062/Students-teachers-join-I-Smile-for-Zayne#sthash.jkRtnESK.dpuf
Shirkey knows that sometimes people with Moebious Syndrome get teased.
"I would just say to them, 'What if that was you'," she said. - See more at: http://www.woodwardnews.net/local/x1647918062/Students-teachers-join-I-Smile-for-Zayne#sthash.jkRtnESK.dpuf
Eleven-year-old
Laynee Shirkey wore purple jeans because she wants other kids her age
to understand that just because someone may look different doesn't mean
"they are really any different than anyone," she said.
Shirkey knows that sometimes people with Moebious Syndrome get teased.
"I would just say to them, 'What if that was you'," she said. - See more at: http://www.woodwardnews.net/local/x1647918062/Students-teachers-join-I-Smile-for-Zayne#sthash.jkRtnESK.dpuf
Shirkey knows that sometimes people with Moebious Syndrome get teased.
"I would just say to them, 'What if that was you'," she said. - See more at: http://www.woodwardnews.net/local/x1647918062/Students-teachers-join-I-Smile-for-Zayne#sthash.jkRtnESK.dpuf
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