STORIES OF MOEBIUS HEROES AND HEROINES, PART 1

Moebius Syndrome Awareness Day this past January 24 is always an amazing day.  Moebius was the number 1 trending topic on Facebook for two days in a row.  People all around this country and all around the world created numerous activities and gatherings to promote awareness of Moebius Syndrome.  And that means the news media picked up on this and shared so many stories of those who have Moebius, and the lives they lead.

So for the next few days I will share as many of these stories as I can, just in case some of you did not see them.  First:  meet Teegan:

******************************

Meet Teegan Bracken O’Reilly, the teenager without a smile.
The pretty 15-year-old was born with a rare syndrome which means she has no expression in her face at all.
So if she’s upset, or when she hears her favourite One Direction song, Teegan looks the same.
Teegan is just one of three children in Ireland who suffer from Moebius Syndrome, a condition a rare congenital neurological disorder which paralyzes the face.
It can affect other areas of the body also but those born with the syndrome have normal intelligence.
Teegan’s mum Lesley explained: “We didn’t known what was the matter until Teegan was 18 months old.
“Before that she was she was tested for anything and everything and when she was diagnosed we were handed a piece of paper with about four lines on top of it with a number to contact in England.
“There was no internet or social media back then so we did rely on phoning people across the world.
“We got in touch with people from America who send us monthly newsletters until the likes of Facebook kicked off.
“That enabled us to get in contact with other people all over the world.”
Teegan has issues with her feet and has undergone a number of operations to get them fixed.
And her mum says she is determined to succeed at what she wants to do.
Lesley said: “Tegan has proved everybody wrong. They said she wouldn’t go to school but she is in mainstream secondary school St Mark’s Community School, Springfield, Tallaght
getting ready to do her Leaving Cert.
“She has come on in leaps and bounds.”
Like many others with Moebius Syndrome Teegan has great difficulty sleeping as her eyes don’t close properly.
And her mum said she found it hard to come to terms with having no expression but now she wants to help other children with the same condition as her.
Lesley said: “It was very hard for her to come to terms with but now she has and she is over that stage.
“Now she wants to help other children who are younger than her to come to terms with the condition.
“Teegan is a normal 15 year old girl who loves hair and make up and going out with her mates.
“She loves One Direction and all the other things teenage girls are interested in.
“Her friends are fantastic and they give her brilliant support.
I think you need to have a good group of friends to bring you along.
Even with her feet problems she goes to hip hop dancing and she doesn’t let anything stop her from doing what she wants
“If someone tells her she can’t do something, Teegan sees that as a challenge to overcome.”
Now Lesley and fellow mum Mags Purtill who is mum to two-year-old Dexter Fennell have set up a Moebius Syndrome group in Ireland to help other parents whose children might be diagnosed with the condition.
Lesley said: “Some children have feeding problems and others could be in a wheelchair for life.
“But Teegan has none of that, she did very well in her Junior Cert and now she’s getting ready for the Leaving.
“Last year Teegan broke her elbow and when the doctors were examining her they were looking for expression.
“And because they didn’t see one they didn’t see she was in pain - it’s hard for people to read her and that’s very frustrating.”
Lesley said she and Mags just want other parents to know there are people out there who can help.
She said: “There are only four or five adults in Ireland who have this and three children including Dexter and Teegan.
“We want to help people get the information that wasn’t available to us.”
For more information email Moebiussyndromeireland@gmail.com or find the group on Facebook.

Collins Photos

Three-year-old Dexter Fennell with Teegan,Emma Donnelly,Nicola McQuirk and Gareth Roberts at the Moebius Syndrome Ireland launch 

**************************************** 

BOOK CLUB DEPT

I finished a very interesting book recently.  It is by Pam Munoz Ryan, titled "ECHO."  It's a book directed at teens and younger readers.  I think Moebius moms and dads and others with Moebius will find it interesting.  Here is some more info about it:

**************************


"Lost and alone in a forbidden forest, Otto meets three mysterious sisters and suddenly finds himself entwined in a puzzling quest involving a prophecy, a promise, and a harmonica.

Decades later, Friedrich in Germany, Mike in Pennsylvania, and Ivy in California each, in turn, become interwoven when the very same harmonica lands in their lives. All the children face daunting challenges: rescuing a father, protecting a brother, holding a family together. And ultimately, pulled by the invisible thread of destiny, their suspenseful solo stories converge in an orchestral crescendo.

Richly imagined and masterfully crafted, this impassioned, uplifting, and virtuosic tour de force will resound in your heart long after the last note has been struck."

******************************

What's also interesting about the book is that the character Friedrich, from Germany, has a facial difference.  He has a very obvious birthmark on his face, and thus faces bullying and prejudice.  Many of us can identify with that.  Indeed, every character in the book faces some kind of prejudice and is seen as, somehow, "different."  Yet they all perservere, as we must all do, and at the end it comes to an interesting, climactic finish.

Happy reading!

DID YOU KNOW? DEPT: THE RARE IMPACT AWARDS

Did you know there were such awards handed out?  Who does it?  The National Organization for Rare Disorders.  Read on:

**************

For more than 25 years, NORD has hosted an annual celebration to honor the year’s top achievements in rare diseases. In 2016, we are expanding the program and want to hear from you about the difference makers.



They are patients, caregivers, advocates, doctors, researchers, legislators, regulators, and public figures. Individuals who make a positive impact on the rare disease community go above and beyond, overcoming certain obstacles, to make meaningful change in the lvies of others. They are making a rare impact.



We want to honor these individuals for their passion, dedication, and support. If you know someone making a rare impact, nominate them today!


Nominations will be accepted through February 1, 2016 at 8:00am EST. Please visit our website for additional information about this event and sponsorship opportunities.


ABOUT NORD

Every day in America, 30 million people wake up to fight the battle with a rare disease. The vast majority are children. For most, there are no cures and few, if any, proven and effective treatments.  NORD provides a unified voice for those courageous individuals, and the parents and other caregivers seeking to help them, so that they won’t have to fight that battle alone.


You can learn a lot more here.


******************

Health Update: how exercise makes you happy

From CNN Health:

**********************

If you've ever taken out a bad day at the office on the nearest treadmill, you know that working up a good sweat can easily turn your day around. And by now you've probably heard that endorphins are the magic bullet behind that post-workout bliss. People love the feeling so much that "endorphin junkie" has even become synonymous with someone who's constantly chasing that exercise high. But while endorphins may get all the credit for your post-run buzz, there's actually a lot more going on behind the scenes. Here's what you need to know about endorphins — and why you might not be an endorphin junkie after all.



What Are Endorphins?
When your body comes under stress or experiences pain (hello, burpees), neurochemicals called endorphins are produced in the brain's hypothalamus and pituitary gland, explains J. Kip Matthews, Ph.D, a sport and exercise psychologist. Endorphins, which are structurally similar to the drug morphine, are considered natural painkillers because they activate opioid receptors in the brain that help minimize discomfort, says Matthews. They can also help bring about feelings of euphoria and general well-being. "Endorphins are also involved in natural reward circuits related to activities such as feeding, drinking, sexual activity and maternal behavior," he says.



Chasing the Runner's High
The idea that exercise creates a huge endorphin rush entered popular culture soon after endorphins were discovered 40 years ago, says Matthews. "Long-distance running was quite popular in the mid-1970s around the same time that endorphins were discovered. Anecdotally, there were a lot of reports of the so-called 'runner's high,'" he says. "By suppressing the experience of pain, a number of researchers put forth the idea that endorphins could be the source of this euphoric feeling after intense exercise." But was that really the case?



The Blood-Brain Disconnect
Yes, blood plasma endorphin levels do increase in response to stressors and pain, research shows. For example, a 2003 study found that the more severe pain someone experience post-surgery, the higher their blood plasma endorphin levels. And research shows that exercise can have a similar effect, but research also suggests that endorphin levels might not increase at all until an hour after you've started working out. (Which doesn't explain why those 30-minute HIIT sessions still leave you feeling awesome.)

So what gives? The problem with jumping to the conclusion that endorphins cause your "exercise high" is that in large-scale studies, scientists measure endorphins present in the blood — not the brain. Then, they make the assumption that if endorphin levels rise in the blood, then it must be because of an increase of endorphins in the brain, says Matthews. But their findings don't necessarily prove that. And it's the endorphins in your brain that would be causing that "high."

In fact, a recent German study found that, while endorphin levels are higher after a run, endorphins can't pass through the blood-brain barrier, which means they probably don't have much to do with experiencing an exercise high. What does affect the brain, researchers found, was a neurotransmitter called anandamide, which is elevated after exercise and can travel from the blood to the brain.

"While there have been some studies to show that exercise can lead to elevated endorphin levels in blood plasma, there have been no consistent findings that, indeed, exercise leads to that famous 'endorphin rush,'" Matthews says.

What's Really Going On?
So if you aren't an endorphin junkie, then what are you? Well, you might be a serotonin or norepinephrine junkie, according to Matthews. When you exercise, your brain increases production of these neurotransmitters, which send messages throughout your nervous system. In the case of exercise, those messages might be something along the lines of: "You're running! This is awesome! Cheer up!"

Studies have linked low levels of serotonin and norepinephrine to depression, which is a much more solid link to feelings of post-workout euphoria than the evidence for endorphins, says Matthews. And it's not just that exercise leads to an increase in serotonin and norepinephrine which may, in turn, reduce depression and stress. Exercise may actually help ward off depression and anxiety by enhancing the body's ability to respond to stressors, he says.

"What appears to be happening is that exercise affords the body an opportunity to practice responding to stress, streamlining the communication between the systems involved in the stress response," says Matthews. "The less active we become, the more challenged we are in dealing with stress."

While the science about why you feel a rush after exercise may be complicated, that doesn't mean the runner's high isn't a very real feeling. And don't worry, we won't judge you if you still wear your "endorphin junkie" T-shirt to the gym.

************************

I JUST THOUGHT THIS WAS INTERESTING DEPT: ON BREAKING A RULE...

From a blog written by Aaliyah Abbas.  I thought it made an interesting point.  See if you agree:

****************************

From childhood, we are taught to always follow the rules. The rules our parents and elders set for us, the rules of the house, the rules of the educational system, the rules of conduct, etc.

So when we reach adulthood, not only do we choose to stick by the rules we are familiar with but also accept that rules go beyond our personal environments to the society at whole, which forms and shapes all of our decisions and choices. It makes us feel right, good, disciplined, and part of a community that follows the same beliefs and practices. We do the things that we do because that's what's expected of us and accepted.

We get lost living a life that is shaped and created by the society. So what about us as individuals? What about creating our own lives as we have imagined to be?

Yes, that is a risky thought. To think for ourselves without letting the norms of the society hold us back. If we go against something, we are singled out. We are immediately judged. We are incorrect. We are labeled. We become an outcast.

Think about it though. Would you rather live a life which is formed and shaped by the rules and limitations of others or live life on your own terms which keeps you fulfilled and happy.

So in order to truly live your own life, It all comes down to three things: finding the courage to seek your own purpose and truth, awakening your soul to step out of the imprisonment of the society to gain knowledge of things beyond any limitations, and achieving a state of self-fulfillment and satisfaction that each of us are entitled to.

So go ahead, think about it. Break a rule or two which keeps you from being a better, fulfilled, and happy you. See how you feel and do it again. LIVE, for life is too short to be living in imprisonment.

*******************************

Moebius Syndrome in the News: Ryan Larsen

He is a young man from Detroit Lakes, Minnesota about to undergo the smile surgery.  Yet another young Moebius hero!  Here's more:

****************************

Four-year-old Ryan Larsen has never cracked a smile - not once, not ever.

The Detroit Lakes boy is a one-in-a-million kid who suffers from Moebius Syndrome. That means he is missing the two nerves in his head that make it possible to smile, frown, look peripherally and blink. It’s what gives us facial expressions.

Ryan has never been able to do any of that, but things are about to change. That smile that his parents know has always been in there is about to show its face.

“We’re headed to St. Louis sometime hopefully in June when he turns 5 to have ‘the smile surgery,’ or what they call the ‘facial re-animation surgery,’” said Nikki Larsen, Ryan’s mom.

Surgeons will take a piece of Ryan’s thigh muscle, along with its blood supply and nerve, and transfer it into the little boy’s cheek, connecting it to an existing nerve in there. After three to four months, that will grow, hooking everything together and giving Ryan the nerve to smile for the first time.

“It’s exciting to think about because as a parent, when you have an infant, you just wait for them to smile or to reach their milestones,” said Larsen. “And then it never happens.”

The surgery is is not new, and it is known to be very successful. In fact, it might even be a little too successful at first.

“It might look like he’s smiling all the time at first - like he’s wearing a mask,” said Larsen, who explains that Ryan will have to be trained how to work his new new nerves through mirror therapy. The same nerve that’s being plugged into also controls chewing.

“So he’ll have to be taught how to differentiate things in his mouth - how to make it smile and to chew and the swallowing process,” said Larson, who says Ryan will get one side of his cheek done first, then three to four months, later he’ll get the other side done.

Although Nikki and her husband, Jim, are excited to finally see an expression on their child’s face, it isn’t something they’ve been set on from day one.

“We were on the fence as to whether or not to make this decision for him because a lot of people wait until their child tells them they want it and makes that decision for themselves,” said Larsen. “But with him going into school we thought it would be better for him as he grows in school and in play and in social situations. We just thought it would be good.”

Since the condition affects Ryan’s facial expression, it also affects his speech. Larson says while he has a great memory and has a full range of language, it remains tough to always understand what he’s saying. The surgery will help with that, and this means one less struggle for Ryan.

Like roughly half of those with Moebius Syndrome, Ryan also has Poland Syndrome, which affects the left side of his body with low muscle mass and a cleft hand. On his left hand, Ryan only has a thumb and a pinkie. Surgery on Ryan’s hand last year was not as effective as the Larsens had hoped, so they’re ready for a win this time.

Folks at the Detroit Lakes United Methodist Church are rallying around the Larsen family with a benefit to help offset the cost of travel.

“In all, it will probably be around 10 or so trips back and forth there (to St. Louis) for the surgeries and checkups,” said Larsen, who figures it will probably also mean being away from home and work for a total of a month.

The church is holding a spaghetti dinner on Sunday, Jan. 24, beginning at 11 a.m. There will also be a silent auction that goes from 11 a.m. to 2 p.m.

To donate to the silent auction or for more information, call 218-847-6030 or 218-841-0463. There is also a Facebook page set up with information at “Smiles for Ryan.”

*******************

Remember: Moebius Syndrome Awareness Day--January 24th

It is coming soon.  More great information can be found here:

*********************

When: January 24, 2016

What: Moebius Syndrome Awareness Day is an annual event celebrated globally each year on January 24th — the birth date of Professor Paul Julius Moebius, the doctor who first diagnosed the condition in 1888.

The goal of Moebius Syndrome Awareness Day is to raise awareness about this rare condition and to educate the world. Each year participants are encouraged to wear purple and raise awareness through various means and channels.

Join us on the Moebius Syndrome Awareness Day Facebook page.

Moebius Syndrome Awareness Posters

Moebius Syndrome Awareness Posters were created for Moebius Syndrome Awareness Day and Rare Disease Day with the words “look beyond face value” or “our smiles come from our hearts.” They are offered free of charge to those in the USA and there are a limited number of the 19 x 13” posters left (we have run out of the poster featuring the two young girls). If you would like a poster sent to you, send an email to marcia@moebiussyndrome.org, and specify which one you would like, and your mailing address. All posters can be downloadedMoebius_Awareness_Posters in the 8.5 x 11” size.

   

More information, project ideas and toolkits coming soon!

FOR MOEBIUS MOMS AND DADS: IS YOUR YOUNG CHILD AN INTROVERT? IS THAT OK?

This is from a very interesting advice column from the Washington Post's "On Parenting" section.  Now this article is not about a special needs child per se.  But the issue that comes up here--a 3-year old introverted child and what to do, if anything, about it--is one that I am sure some Moebius parents have faced.  So indeed, what to do if your child seems introverted and shy?  Read on:

***************************

Q: My 3-year-old is somewhat shy and introverted. She socializes well enough at preschool, but on the weekends she just wants to hang out with family. As an introverted person myself, I’m fine with that. My instinct is that full-time preschool is plenty of social time and it’s okay to recharge with family time on the weekend, but my more extroverted husband disagrees. So I’m wondering whether I should be arranging some play dates or more social activities.

A: Thank you for this question, because many parents ask me about this. And when I read this, I see two questions: One is about introversion and one is about socialization of young children. Let’s tackle introversion first.

There is much recent research into introversion and how valuable it is in today’s culture. Although Americans prize extroversion (bigger, better, louder, more!), many people are beginning to recognize that introversion has some positive qualities.
Susan Cain, the author of “Quiet: The Power of Introverts in a World That Can’t Stop Talking” writes, “Introverts, in contrast, may have strong social skills and enjoy parties and business meetings, but after a while wish they were home in their pajamas. They prefer to devote their social energies to close friends, colleagues, and family. They listen more than they talk, think before they speak, and often feel as if they express themselves better in writing than in conversation.” So, introverts are not people who are focused only on themselves or getting “gratification from one’s own interests.” They often like deeper waters, closer friends and more in-depth conversations. They are often listeners, and we need those. Badly.
Unfortunately, Americans prize loud, opinionated and brash attitudes. We are a “go big or go home” culture, and as Cain poignantly writes, “Introversion — along with its cousins sensitivity, seriousness, and shyness — is now a second-class personality trait, somewhere between a disappointment and a pathology. Introverts living in the Extrovert Ideal are like women in a man’s world, discounted because of a trait that goes to the core of who they are. Extroversion is an enormously appealing personality style, but we’ve turned it into an oppressive standard to which most of us feel we must conform.”
When we view introversion from this standpoint, of course your husband wants your daughter to have play dates. When it comes to socialization and extroversion, more IS more! Even ambivert parents (people who fall in the middle of intro- and extroversion) believe that children need to be socialized so that they can learn how to play and how to be with their peers.
And here is where the waters get muddy.
First, we don’t really know (or I don’t really know) whether your daughter is an introvert or just a normal 3-year-old.
That’s because it’s 100 percent normal for a 3-year-old to show signs of shyness or want to be around only her family. Why? They are her closest attachments. If they traveled for work all week, gave loads of presentations, and shook countless hands, even the most extroverted people would want to come home and hole up with their closest family and friends. It is natural for humans to retreat to the safety of those they trust most, and when it comes to children, this is true a million times over.
A 3-year-old is an especially amazing example because you are just beginning to see the blossoming of a true individual. The 3s are usually when parents begin to see the “no’s” pick up, as well as the 3-year-old’s understanding that she is truly separate from Mom and Dad. But more important than this separation, 3 is a time when a child is especially attached to her inner circle. It is normal to hear a 3-year-old say, “This is my mommy, this is my daddy.” This is an age, as developmentalists call it, of “belonging and loyalty.” When you zoom out, it makes complete sense. Before humans can become separate entities, they have to feel deeply rooted to their group. The deeper the roots, the taller and wider the tree (and the child’s separateness).
So, this little girl is away from her key attachments all day at preschool, and sure, she may like the crafts, the other kids and the teachers, but they don’t hold a candle to her parents. Contrary to what almost everyone thinks, children under 5 don’t need to go to school to be socialized. You cannot force a child to be “socialized” any more than you can force a baby to walk. It happens when the time is right. And this will happen more with time and close connections with the parents and caregivers than by continually forcing children into schools at younger and younger ages.
Does that mean a 3-year-old should not be in school? Or that it is bad for them? No, not necessarily. Because of our current culture, work schedules and more, it is often necessary to place children into a preschool or day-care situation. Many of these schools know that the primary need of a young child is to play, and they create wonderful environments for the children.
The point is that, ultimately, the child’s deepest desire is to be with her parents. With you. So if she gets to the weekend and wants only you, then you go with it. It is not putting off “socialization” or holding her back in any way. It is recharging attachment batteries so that she heads back to school renewed on Monday.
In essence, my only advice here is to follow her need. Young children, unlike adults, feel all of their emotions in the purest and undiluted way. You can trust that when the 3-year-old wants to be with you, that is what she really wants. And it is perfectly fine to not push any other agenda.
Does this mean you cannot take her to a park? Go to a place with a bunch of other kids? No, go ahead. Have fun. Just don’t fool yourself into thinking that there is “socializing” happening. Instead, go for what’s important at this age: movement of the body, fresh air, laughter and fun. That’s it.

*************************

AWARENESS WATCH: GRADUATION RATES TRENDING UP FOR THOSE WITH DISABILITIES

Good news:

****************

For the third year in row, federal officials say that the graduation rate for the nation’s students with disabilities is on the rise.

Figures released this week indicate that the graduation rate for those with disabilities hit 63.1 percent for the 2013–2014 school year.

The gains come as federal education officials are touting four years in a row of record-high graduation rates across the country with some 82.3 percent of all students receiving diplomas during the 2013–2014 school year.

“America’s students have achieved another record milestone by improving graduation rates for a fourth year,” U.S. Secretary of Education Arne Duncan said. “The hard work of teachers, administrators, students and their families has made these gains possible and as a result many more students will have a better chance of going to college, getting a good job, owning their own home and supporting a family.”

The data issued this week provides a snapshot of the number of students nationwide earning a regular high school diploma within four years, along with breakdowns for various demographic groups.

Among students with disabilities, graduation rates varied markedly by state with a high of over 83 percent graduating in Arkansas and a low of 27.6 percent in Nevada, though the Education Department has indicated that reporting differences from state to state play a role in the variation.

*******************