RARE DISEASE DAY 2014: "NORMAL IS GONE"

Today, February 28th, is Rare Disease Day in the United States--and, happily, in honor of that, CNN today in its Health section featured a story on children with rare diseases.  Moebius Syndrome is certainly a good example of a rare disease, although this article highlights other rare conditions.  Still, it is good that an article like this appears today; and did you know, as this piece points out, that over 30 million Americans have some kind of rare disease?  Read on:

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Being diagnosed with a chronic disease -- any disease -- is hard. But imagine first spending months or years going from doctor to doctor, trying to figure out what's wrong. Then, in the end, being diagnosed with a disease few people have ever heard of.

Now think about all that happening when you're just a kid.

Nearly 30 million people in the United States have a rare disease. What qualifies something as a rare? It's a specific disease or disorder that affects fewer than 200,000 Americans, according to the National Institutes of Health's Office of Rare Diseases Research. Scientists have identified more than 6,800 of these diseases worldwide.

In honor of Rare Disease Day, CNN asked readers to submit their stories. We were inspired by these children living with rare diseases. They endure stares, disbelief and debilitating symptoms as they find joy in life's simple pleasures. Here are a few of their stories:

Mitochondrial myopathy

The fact that Sam Brinneman, 16, is alive and well is inspiring all on its own, says his mom, Chris. The Brinnemans knew something was wrong within days of Sam's birth -- he had a weak cry, wasn't nursing well and was "floppy," Chris says. It took three years for doctors to diagnose Sam with mitochondrial myopathy.

Sam Brinneman has mitochondrial myopathy.

Since then, Sam has exceeded everyone's expectations. He's currently a sophomore at a rigorous college-prep high school in Fort Wayne, Indiana. He participates on the school's speech team and in architecture club. Last year he was the state's Goodwill Ambassador for the Muscular Dystrophy Association.

"He was so deathly ill at times as an infant and toddler, that he constantly amazes me with his abilities," Chris said. "The thing that makes me most proud is the fact that he teaches acceptance wherever he goes. Because he is so open about his disease and so willing to share, he has rarely -- next to never -- been teased by his peers."

Sam struggles on a daily basis to get enough calories for optimal nutrition. He wears a breathing machine to bed to treat his sleep apnea. His parents are diligent about keeping him away from sick people, as his immune system is weak.

Yet Sam never uses his disease as an excuse, his mom says. "He has spoken with groups of all sizes, spreading the message about (mitochondrial diseases), including the need for quicker diagnosis, the need for treatment and the hope for a cure."

Read more about Sam's story on iReport

Cyclic vomiting syndrome

"I never expected my little girl to have to fight a battle with a foe she couldn't see," Tricia Andersen said. But when her daughter, Ali, was 13 months old, she started throwing up and couldn't stop. For a day and a half, Tricia watched as Ali retched painfully and was admitted to the hospital for dehydration. When she was discharged the vomiting episodes continued -- every three weeks like clockwork.

Ali Andersen has cyclic vomiting syndrome.

After a year of doctors' visits, Ali was finally diagnosed with cyclic vomiting syndrome. It took the family another six months and a trip to another state to find a medication combination that would work to ease her symptoms. Even then, she was hospitalized half a dozen times by the time she was 9.

Ali is now 11 years old, and doesn't let CVS dictate her life, Tricia says. She does robotics at school, plays basketball and participates in several track and field events, even though she has to wear an ice vest to keep her body temperature from getting too high.

"She gets involved with the activities that make her happy," her mom said. "[This] allows her to be a 'normal' kid despite having a chronic illness. Having CVS is a part of her life, not what controls it."

Read more about Ali's story on iReport

Cutaneous mastocytosis

When Kellie and Josh Ewell saw their baby, Gage, for the first time, they were shocked.

"His sweet body [was] covered from the tip of his head to the soles of his feet with blisters, hives, knots, and raw places where the blisters had come open," Kellie wrote on iReport. "His skin the texture of an orange and fire-engine red."

Gage Ewell has pediatric diffuse cutaneous mastocytosis.

Gage, now 2, has pediatric diffuse cutaneous mastocystosis. An overabundance of mast cells in his body causes severe allergic reactions to just about everything. His skin turns purple, he struggles to breathe and his parents can only watch as he tears at his skin, trying to find some relief. He is in constant pain, Kellie says.

Despite his illness, Gage is "a little boy anxious to learn and explore the world," his mom said. He loves people, laughing, playing outside and with the family boxer, Colt. He has never known a life without itching, aches or pains, but doesn't let that stop him.

"I want him to be anything that he wants to be and go after any dream that he has," Kellie said. "I never want him to hold back out of fear of what might happen."

Read more about Gage's story on iReport

Arthrogryposis multiplex congenita

Kailen Carpenter is a ladies' man. The 12-year-old learned early that women love to help him with things like carrying his lunch tray or holding his hand as he climbs steps -- and takes full advantage of their companionship.

Kailen Carpenter has arthrogryposis multiplex congenita.

Kailen was diagnosed with arthrogryposis multiplex congenita, a condition that affects joint movement, shortly after birth. The condition was caused by his cramped quarters next to his twin in utero, his mom Kayawna says.

His arms are locked in a straight position. He cannot bend his arms to put on his clothes, use a knife and fork, comb his hair or touch his face. Yet he teaches everyone around him the meaning of perseverance, she says.

He's also a terrific dancer and a nearly straight-A student.

"This is an able-bodied world, and people like me have to learn how to live in it," Kailen said. "I can't move like you do, but I hold my own... (People) should take every day and live it like you're awesome. I do."

Read more about Kailen's story on iReport

Leukodystrophy

MRI scans of Ryan Wright's brain show he has the white matter of a 6-month-old baby. Yet he speaks in five- to six-word sentences, rides his bike and goes to preschool.

Ryan Wright was recently diagnosed with leukodystrophy.

Ryan is 4 years old.

He was recently diagnosed with a rare form of leukodystrophy, a progressive genetic disorder that affects the development of myelin in his brain. Myelin is fatty tissue that protects the brain's nerve fibers. The disorder affects Ryan's balance and muscle strength, and causes hand and eye tremors.

His parents try to keep his life as normal as possible in between therapy sessions. He sees an eye doctor every three months, and a neurologist and geneticist every six months.

"It is very hard to tell the prognosis for children with leukodystrophy," his mom, Tricia, said. "Some children stay the same for the rest of their lives, some children decline fast, and some children decline slow."

Ryan never gives up, Tricia says, and is fiercely independent. His geneticist says these traits will keep Ryan healthy longer.

Read more about Ryan's story on iReport

Juvenile dermatomyositis

Tristan Coffey is 5 years old. In July, he developed a mysterious rash on his hands. Three months later, he was diagnosed with juvenile dermatomyositis, a rare autoimmune disorder.

His immune system is attacking itself, causing painful inflammation in his joints, muscles and internal organs. The Coffeys call it the "invisible illness" because except for the rashes on Tristan's hands and feet, there is little obvious to the eye.

Tristan Coffey has juvenile dermatomyositis.

"Everyone looks at him and says 'Oh, he looks so great,' but they can't see his body attacking his heart, or his liver, or his veins, or his muscles," his mom Brianna said. "They can't see how much he is in the hospital, all that he endures, all the treatments."

Juvenile dermatomyositis is treatable, but not curable. Tristan takes 11 to 14 medications a day. He has a catheter port in his chest for weekly steroid infusions and monthly IVIg therapy. These medications cause huge mood swings, and limit Tristan's ability to be outdoors in the sun.

Despite all this, Tristan is always first in line to play soccer and at the playground with his friends. He's also one of the funniest kids you'll ever meet, Brianna says. "He will always light up a room, the hospital, the grocery store -- wherever we may be."

He's also super sensitive to other people's feelings, she says. "Occasionally he will catch me crying. He will put his little hands on my cheeks and wipe away my tears and say "Mom, I just love you and I'm going to be OK. Don't cry, Mom."

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ON THE AWARENESS FRONT: ADVICE COLUMNIST HAS GOOD ADVICE ON STEREOTYPING

This is from the Washington Post of a couple of days ago.  The advice columnist is named Carolyn Hax.  I post this particular column here not necessarily because we all need the advice she gives--on the contrary, I think most of us in our community knew this already--but rather just to note the fact that this advice is being given.  It's good news.  Really it's what we're all about.  And maybe this is an argument, a point, that we can use when talking about our condition to others--to those who've never heard of it, or especially to younger children.  Indeed, stereotyping can be the problem.  You shouldn't stereotype people just because of what skin color or gender they have; or just because physically they look different.

Read this column, and I think you'll see how it can easily be linked to Moebius and conditions like it.  Use the points she makes in the weeks, months, and years to come:

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Dear Carolyn--My soon-to-be first grader is in a small camp. There happens to be a handful of boys a few years older whom he has taken a liking to, and he has been picking up bad things. The other day he told me, “Girls drink Pepsi, so they can get sexy, boys go to college, so they can get knowledge.”
I know he doesn’t get exactly what he saying, but he knows it’s a put-down to girls. I could see this coming out of a 9-year-old, but it really hit me hard coming from a 6-year-old. My husband and I have talked to him about hanging out with good kids and not emulating bad behavior, and that girls are as smart as boys.
I know the road ahead is long, and he’ll be exposed to much much worse than stupid sayings. But how can I help him tell the “good kids” from “bad kids”?
Anonymous
You can start by staying away from the “good kids”/“bad kids” mind-set. It’s just a branch of the same messed-up tree that produced the “girls-are-sexy/boys-are-smart” howler in any of its forms, rhymed or non-.
People are complicated. Even the ones who somehow aren’t complicated deserve to be treated as individuals, not members of this or that group.
So your message to your 6-year-old (and then 7- and then 8- and so on) needs to be that it’s not right to put people in groups. Everyone’s different and everyone deserves the chance to be what he or she wants. Boys can be sexy and drink Pepsi! Heck, girls can drink Pepsi, be sexy and go to college, or none of the above if that’s what floats their boats. I just caution against going to Jupiter to get more stupider.
You do have to be careful not to take every little thing too seriously, lest you become easy for him to tune out. If he hasn’t picked up the anti-parental eye-roll yet, expect it soon.
But the consistency of your anti-stereotype message is what’s going to make it stick, and, conveniently, just about everything you experience with him is a teaching opportunity for this.
If he’s handed a kids’ menu at a restaurant, for example, assure him he doesn’t have to eat what people assume kids like. Or, ask him his opinion of things instead of just sending opinions one-way, parent to child. Or, when he comes home with another howler he learned from the camp boys, see if you can find an age-appropriate way to help him reason through it. (And ask him to define “sexy” for you. Reminding kids occasionally not to use words unless they know what they mean isn’t the worst thing, and can save you both some red faces.)
Teach him to resist stereotyping by teaching him to respect individuality, and teach that by respecting him as an individual. Which brings us back to the good kids/bad kids conceit: That boxes people into roles as surely as the playground rhyme does, and no one deserves that. Certainly not 9-year-olds, who can blossom unforeseeably into fantastic adults — particularly if no one tags them as “bad.”

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HOW TO DEAL, part 2: FOR MOEBIUS MOMS AND DADS--HOW TO GET YOUR CHILD ENGAGED

So today is part 2 of my little series on, I guess you could say, a constant topic with this community:  living with Moebius Syndrome.  Again, what I'm writing about today was inspired by some questions asked by my friends in the Moebius community who are on Facebook.  They ask lots of good questions.

Today let me address Moebius moms and dads.  So suppose you are the parent of a Moebius child.  Maybe he or she is a teenager or thereabouts; or maybe a little younger.  But what many parents worry about is the same:  my child is a little shy.  He or she doesn't have many friends.  Maybe he's always been this way.  Maybe it's become worse because she's been the victim of teasing and bullying.  What will happen when my child goes to the big middle school/high school/college down the road?  How will my child be able to cope?  How can I make him or her less shy?

These are hard questions.  Maybe the first and most important thing to realize is that there are no easy answers or magic solutions.  Look, lots of people who don't have ANYTHING physically "different" about them are shy, too.  Who can explain that?  Everyone is different.  And it's difficult to change who a person fundamentally "is."  But in any case, here's the suggestions I would make about this:

1] Always be encouraging.  Don't make this a huge negative thing.  Drumming into your child that he or she has a "problem" isn't going to help anything.  Instead, remind your child of his or her talents and qualities; encourage him to do things and to go out and meet people; if and when it happens, again, be encouraging, but don't make a huge deal about it and act like a miracle has occurred.  Your child has Moebius Syndrome; he or she isn't stupid.  She can see how you act and can guess why; she doesn't want to feel manipulated.

2] But beware of forcing your child into things.  At bottom, your child is going to have to make his or her own way in the world.  He has to figure things out for himself.  Sometimes that has to happen on his schedule, when he's ready.  Forcing your child into this or that activity, forcing her to join this or that group, just might not have the right outcome.  Obviously it could lead to resentment and anger, or even worse behaviors.  There has to be a balancing act.  Obviously you don't your child to live a shy, hermit-like existence.  But you can't handcuff her and force her out of the house, either.  I lean towards:  just be encouraging; realize it may be a slow process; and having it happen in baby steps is okay.  What if your child got out of the house and just went to a movie, or to a store, any store, by him or herself?  That's a good first step.  It's acting independently; a good way to begin.

3] Don't get frustrated.  This can be one of the hardest parts of this for parents.  After all, yes, you're the parent of a Moebius child.  But you don't have Moebius yourself.  You didn't have it when you were younger.  So for you, this shyness thing can be hard to understand.  I mean, when you were young, you weren't so shy.  You were able to go up and meet people.  You were able to go out and do things.  People aren't bad.  So why does your child have such a hard time getting out, meeting people????

But remember:  your child has Moebius.  He looks different.  You don't.  Your child may very well have had to endure stares; teasing and nasty comments; odd looks and comments and reactions from strangers; strangers even assuming that you have some form of mental retardation (even though you've never said a word to them.).  Those are not the easiest things to go through; and they don't exactly make you excited to go out and meet the latest person who...might just give you odd looks, etc.

That doesn't mean it's okay to let your child be home alone forever.  But just remember, it's not the easiest thing in the world for your youngster to go out there and face the world, and thus if the process is a slow one, that's okay.  And normal, really.

4] Above all, our Moebius children just need to find their voice.  And that just means:  help your child find his or her identity.  What do they really like?  What are they passionate about?  What then might they want to do with their lives?  What are they really good at?  What do they want?  Encourage them in their hobbies.  Encourage them as they talk about possible careers.  Just encourage them to find out who they are, and where they want to go.  Again, your encouragement in that search is crucial.  But really this is the key.  Once your child begins to discover his passion, his "voice", then some of these problems begin to decline.  When you find a voice--a purpose, maybe?--you're going to move about in life with more confidence.  You're going to know more about where you're going.  You become more mature.  Maybe some of that shyness will go away (though it may never completely go away). 

Again, this can take time.  It doesn't happen right away.  But it will happen.  And you can help it along.  Many of the people I know with Moebius Syndrome are some of the most accomplished people around.  Even though we can't smile.  But our smiles come from our hearts.  So, ultimately, will come our voices...

HOW TO DEAL, PART 1: NO FACIAL EXPRESSION? NO PROBLEM

Today and tomorrow I am going to do some musings on my own.  It's always good to muse.  So first of all:  you know, some of my Moebius friends on Facebook have been asking really good questions lately.  For example, one brought up this question:  suppose you want to act, be in plays, the theater, etc.  But for the most part we can't show facial expression.  Doesn't that harm our acting?  And let's broaden it out:  doesn't the lack of facial expression make it more difficult for us in general?

These are good questions.  They're natural ones.  I mean, most everybody else in the world can show facial expression.  It helps them communicate.  It's a downer that we can't.  No doubt about it.  But let me use some of my own experience to shed more light on all this.  For there are things we can do.

I teach.  I teach history at the college and university level.  So I do lots of lecturing.  And yes, there are definitely times when I lecture that I wish I could show facial expression.  There are times I want to smile and frown.  But I can't.  Still--there are things I CAN do.  For example:

1] I use my hands a lot.  I use lots of hand gestures.  I never consciously said to myself that I was going to do that.  It just sort of naturally evolved as I talked.  But it helps me.  If I'm making an important point, I punch the air, I point my finger.  If I'm explaining why something happened and there are 3 or 4 reasons why, I hold a hand out and put out fingers for each point covered.  If I'm talking about somebody in history who was especially angry or excited about something, I'll sort of play-pound the table or lectern.  (and if students are sleeping, that'll wake them up.)  These are all ways to make points.  And to show you have energy and that you're into what you're saying.

2] And there are things you can say that can help you express the emotion you wish to get across.  If I'm telling a joke or trying to be funny, I'll often end whatever I'm saying by going "hah hah" or something like that.  If I'm being sarcastic about something or just kind of playing, again, at the end of whatever I said I'll add "I'm of course being sarcastic there" or "I'm kidding."  You can't smile or frown, but you can still let people know how you feel.

3] And don't forget about the voice inflections you can use.  In lecturing, if something is really important to say, I slow down and say it very loudly and carefully.  There are ways to put earnestness in your voice.  There are ways to put frustration in your voice--and at the end of it you can say "argh!" or something.  And all these things can be used if you're just talking to one or two other people.  If you're joking, say so...or add "hah hah."  If something makes you sad or you're feeling sad, say so.  I think the same goes for acting.

Finally, don't forget this:  your real friends, people who know you at all well...they know how you feel.  That's the funny thing about having Moebius.  No, we can't show facial expression.  So how do people know where we're at?  But the people who really know you and care about you--they know if you're happy; they know if you're sad.  So we do show emotions.  We just need to know that we do.  And to maybe use simple ways to let even more of it out.  Think of what might work well for you...

10 Ways to Lead a More Balanced Life

From the I-Just-Thought-This-Was-Interesting Dept.  This is an essay written by a TV actress with young children, who also writes novels.  Not exactly your typical person.  So how can we mere mortals learn from her?  But remember--what her life means is that she's busy.  But we're all busy, with our own forms of daily chaos.  What kind of principles do we need to cope?  We can learn something here--read on:

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It's impossible not to like Ali Sweeney. When we meet for breakfast, the actress, 37, is dressed in total jean mode. We're just up the street from the Los Angeles studio where she has been playing Sami Brady on Days of Our Lives for 21 years. (Yep, 21.) And that's in addition to hosting The Biggest Loser.

But lest you think she's one for staying put and sitting still, Ali—who recently announced she's leaving Days—just wrote a novel (her second), Scared Scriptless, out in June. "Like everything else in my life, I had a way to squeeze it in!" she says of writing the book in 30-minute increments. "I'd put on headphones in a crowded room while my kids played." Those kids are Ben, 8, and Megan, 5, with husband Dave Sanov, a highway patrol officer. Seriously, how does she get it all done and still seem this serene? Here are Ali's best-life strategies.

Spring-clean your diet

"No matter how healthy you are, you let things slide. So it's a really good idea to clean your diet and start fresh. For one week, eliminate sugars and sweeteners. It's like anything else—you start to build a tolerance and then you need more to get the same effect. This isn't to say your food should be bland. Buy fruits and vegetables that are in season, and use herbs and spices you really like."

Make fitness your friend

"My top health regret is all the years I spent looking at fitness as the enemy. I thought of it as a punishment. It wasn't until The Biggest Loser that I started seeing it as a reward. Find that switch in your own mind. In a busy life, it's a luxury going to the gym. But it's so much cheaper to take care of your body now than to pay the health bills later." 

Don't think of fitness as an all-or-nothing proposition

"So you have limited time to exercise. That doesn't mean you have to do nothing. I'm guilty of this, too. But even if it's 10 minutes, while you're watching TV that night, do squats, lunges and push-ups during commercials. In your office, sit on a medicine ball at your computer for an unintentional core workout."

Dream away (then get concrete)

"My dad was an inspiration to me. He's creative but not in the traditional sense—he's in finance. For any idea I've ever had, my dad has always said, 'Let's make a plan.' I think the hardest thing for people who do have a dream is What are the steps that get me there? That's how I was taught. So for me it was like OK, you want to write a novel. What are the steps? To sell it, you're going to need a story. OK, we'll come up with a story. So instead of it being this big, insurmountable vision, you break it down into the little pieces that get you there. It's like the Shel Silverstein poem: She ate a whale, one bite at a time."

Make mealtimes matter "In our family, we all make dinner together: The kids help me cook or set the table, and Dave is on the grill. And when someone's favorite song comes on, we'll stop and do a 'Dance break!' You either shout it out or someone grabs you and starts dancing, and Dave will have the BBQ tongs in one hand. I have videos of us just rocking out to Michael Jackson in our backyard."

Get your hands good and dirty

"I find if I'm not outside enough, it can add to my stress level. I go on hikes, and I do a lot of my running on trails rather than on streets. My perfect, happy day would be a combination of a couple of hours on set, getting a good workout in and then spending the afternoon in the backyard with my kids and just practicing baseball. I think it's so important to take advantage of nature, to get your hands dirty, to garden, to play at the beach. Be a part of nature. It's not to be treated with kid gloves. We're supposed to have fun in it."

Celebrate every last squat

"If you're waiting to be happy for when you're actually at your goal weight, that's a bummer for you. Enjoy the small milestones along the way: Enjoy the workout that day. Enjoy each healthy dinner. Enjoy the process and you'll achieve your goal sooner and better than you ever thought you would. Don't wait for it and be miserable because it hasn't happened yet. Enjoy getting there as much as the end result."

Try what terrifies you

"When I started to visualize my career early on, I saw myself in a specific way: I'm a very girl-next-door-type character. Then I got cast on Days of Our Lives as the villain. My character quickly became, like, persona non grata in Salem. [Laughs] She had this crazy set of scenes that would involve me having to play—I'm afraid to even say the words!—a sex kitten. Then I quickly became a mother on the show. So at 18, I was playing three things I didn't see myself as at all: maternal, a sex kitten and a nasty villain. I had to really learn to set aside any fears or self-consciousness and bully my way through it. Like This is not my strong suit, but I'm going to do this strip tease and give it my best shot! That was a great lesson—learning how to fake it 'til you make it. There is a weird confidence that comes from hitting your most insecure parts and getting through moments like that." 

Take the anxiety out of eating

"People always ask me, 'What's your cheat food?' But I don't have one, because I don't live my life depriving myself, so I'm not desperate for my cheat day! I don't judge myself for every single meal or for eating something that's not perfect. When I take the pressure off myself each step of the way, the stakes aren't so high. When you relax a little bit, then you're not constantly craving things."

Remember that success is 99 percent perspiration

"I learned a great lesson from my mom. When I was a little kid, my mom put me in different classes, from ice-skating to karate. And I remember her always saying to me, 'It's not about whether or not you're really good at it. It's about showing your teacher that you're trying as hard as you can.' It's such a great lesson. So on The Biggest Loser, the number one thing that I root for is hard work. I relate to people who really want it. I know that the numbers on the scale sometimes don't reflect the effort. I just love and admire the ones who try." 

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AUTISM UPDATE

Because autism is sometimes--though by no means always--associated with Moebius Syndrome.  So today we have something especially for Moebius moms and dads, especially if you know, or perhaps just suspect, that your child has autism.  The question:  does autism make the parents of those children who have it parent differently?  And then the question is:  if indeed they do, as a new study suggests, then is this parenting difference a good thing?  Read on about this and see what you think--and let us know what you think:

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A new study suggests that moms of kids with autism address their children’s behavior differently than parents of kids without the developmental disorder.
Researchers found that mothers with children on the spectrum were less likely to set rules or use discipline, but more frequently imposed so-called positive parenting, encouraging good behavior rather than focusing on the bad.
The findings come from a study published in the March issue of the Journal of Autism and Developmental Disorders which is believed to be among the first to look at parenting behavior among moms of individuals with autism.
For the research, nearly 1,000 mothers of children ages 6 to 18 in Belgium and the Netherlands completed a questionnaire about their parenting approach. Participants in the study included 552 families with a child with autism and 437 families of kids without. None of the children had a diagnosis of intellectual disability.
Moms of children with autism were more likely to report adjusting their environment or their communication to suit their child’s needs and were more intimately involved in problem-solving for their kids.
What’s more, even though children with autism displayed more behavior problems, the study found that their parents were less controlling. It’s unclear, the researchers said, whether this is because such moms are more concerned with addressing the cause of their child’s behavior or if these parents are simply conditioned to expect less.
“Many mothers reported important strengths in adjusting their behavior to the diagnosis of ASD for their child. We do not know whether this is a result of parent involved interventions or whether mothers spontaneously attune and respond to their child behavioral cues,” researchers from University of Leuven in Belgium said in their findings.
“These results suggest that parenting behavior may be important to consider in problem behavior in children with ASD and the effectiveness of interventions focused on parent behavior merits further examination,” they said.

 

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GOOD NEWS DEPT

A boy with special needs, who earlier said he didn't want a birthday party because he really didn't have any friends, gets over a million likes on Facebook:

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When a Michigan boy with special needs said he didn’t want a birthday party because he had no friends, his mom turned to Facebook and found him more than a million supporters.

The boy’s mother, Jennifer, created a page on the social network earlier this month.

Over a million people are supporting Colin, a Michigan boy with special needs, through a Facebook page his mother created ahead of his eleventh birthday. (Facebook)

“Because of Colin’s disabilities, social skills are not easy for him, and he often acts out in school, and the other kids don’t like him,” Jennifer, who did not want her last name used, wrote on the page. “So I thought, if I could create a page where people could send him positive thoughts and encouraging words, that would be better than any birthday party.”

So far, the page titled “Happy Birthday Colin” has garnered 1.8 million likes and the boy’s eleventh birthday is not until March 9. The response has been so impressive that Colin’s family opened a P.O. Box to accept cards and it’s overflowing with mail.

“He’s going to have a lot of friends after this. They may not live by him, but he’s going to have a lot of friends,” Jennifer told WOOD TV in Grand Rapids, Mich.

Amid all of the attention, Colin’s mom — who is no longer doing any interviews — wrote on Facebook that she’s still trying to keep the page a secret from her son until his birthday.

“Several kids at school told him they saw him on the news, and he overheard a teacher saying to another teacher that she saw him on Facebook,” she wrote. “Please be careful if you know Colin in real life.”

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People sometimes can display a lot of compassion...

CAREER LESSONS FROM THE OLYMPICS

Yesterday we talked about how the Olympics can provide teachable moments for your children.  Today--how the Olympics provide teachable moments for adults!  Specifically, for your careers. 

And this is an important issue for all people, and especially for those of us with Moebius Syndrome.  Let's face it, it can be tough for us out there in the job world.  People look at us a lot harder.  Because we look different, some automatically assume that we have an intellectual disability; or in general that we're so "different" that we could never do the job.  Or, even if we do get hired, some--because we look and sound a bit different--maybe will never quite trust us, will never quite believe in us, are reluctant to promote us.  Some of you out there have told me your stories.  I know this can happen.  And yet, we keep at it; we keep trying.  It's how we roll.  And we do amazing things every day.  And we can keep learning, too.  The article below can help with that.  I saw it today and thought it was interesting.  What do the Olympics have to teach us adults out here in the working world?  Read on:

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Struggling with balance in the workplace? Take a cue from Shaun White.
White, a professional snowboarder, is arguably one of the biggest stars in this year’s Olympic Games in Sochi, and fans were likely disappointed when he announced Thursday he would not be participating in the slopestyle snowboarding competition to protect his health.
After much deliberation with my team, I have made the decision to focus solely on trying to bring home the third straight gold medal in halfpipe for Team USA,” White told the TODAY show. “However, with the practice runs I have taken, even after course modifications and watching fellow athletes get hurt, the potential risk of injury is a bit too much for me to gamble my other Olympic goals on."
White is a two-time defending gold medalist in the halfpipe and will giving his full attention to a third win,
The decision couldn’t have been easy, but career expert Jill Jacinto, says it demonstrates the struggle many employees have when it comes to prioritizing in the workplace. The fall out of the financial crisis has led many companies to scale back their payrolls, which means they are demanding more from current workers.
“People do tend to over commit and over promise,” Jacinto says. “And at the end of the day, they come up short on both ends. You need to take a realistic look at your time, start smaller and choose when to show your strengths.”
Here are a few other lessons Jacinto says workers can learn from Olympians, who start competing Friday in Russia:
No. 1: Your Reputation Matters.  Olympians represent so much more than just athletic prowess, Jacinto says. “You represent your fans, your country and are a role model. It’s always about acting with leadership and being your best self.”
Workers’ actions can reflect poorly on an employer. Tweeting a disparaging photo or blogging about another company’s misstep lives online forever and speaks volumes about the poster’s  character. “It’s making sure you maintain your personal brand and understand the impact it can have.”
No. 2: Practice Every Day. The athletes competing in Sochi have trained for most of their lives to participate in the games, and workers should realize that there is no such thing as an overnight success.
“A lot of people snap their fingers and think they will immediately make a lot of money,” she says. “Millennials in particular have that quality in thinking, and don’t realize how much work goes into it. There is never a point in your career where you can say, ‘I know it all, and I can stop learning.’”
An event like the Olympics is a great example of when hard work and practice all come together to create success, which is something every worker can learn from.
No. 3: Think Global. The Olympics bring athletes from around the world together, demonstrating the importance of respecting, absorbing and learning about others.
“You should have an open mind outside of your comfort zone,” Jacinto says. “If you take this approach in the workplace, you will have a better understanding of the industry on a global scale.”
No. 4: You will Fail Sometimes, Learn to Deal With It. One of the most memorable awards ceremonies from the 2012 summer games in Beijing when U.S. gymnast McKayla Maroney took the silver home for the vault event, and made her now-infamous “not impressed” face.
The way she handled her victory will long outlive how she placed in the games, Jacinto says.
“Most people might not even recall that she came in second, but will always remember that snarky face over her performance,” she says. “It’s a lesson to be graceful and become aware of your actions.”

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TEACH-ABLE OLYMPIC MOMENTS

For Moebius moms and dads and all moms and dads.  I know a lot of you out there are always looking for teachable moments for your kids; and of course everybody's been following the winter Olympics.  Wouldn't it be fun if your kids could learn something from the Olympics?  They can.  Read on--some interesting stuff here:

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For about two weeks, the DVR in our house will get a rest while we devote our kids’ screen time allotment to the Winter Olympics. I couldn’t be happier about this. Not just because sports are fun and they get to cheer on Team USA, but because I’m finding tons of valuable life lessons crammed between commercial breaks. For example:

* Even the people who are the best in the world at what they do don’t get it right every single time. See Miller, Bode.
* When you stumble, get back up and keep going. The Czech Republic’s Sarka Pancochova fell in the women’s slopestyle snowboarding competition on Sunday, cracking her helmet. But she got up and made her way to the bottom of the hill on her own.
* Women are incredibly strong and can do amazing things. Things that don’t require makeup, extensive time getting their hair done, or an airbrushed body. Pretty much the exact same things that men are doing. For example: Julia Mancuso.
* Smile when you win, and hug your competitors. Smile when you lose, and hug your competitors. Just ask the women’s slopestyle snowboarders.
* Family is everything. Canada’s Alex Bilodeau says his brother Frederic, who has cerebral palsy, is his biggest motivation. Frederic was at the finish line when Alex won gold in the men’s moguls in Vancouver in 2010, and again in Sochi.
I don’t know if these lessons are registering in the moment. When we turned off the television last night, there was no deep discussion of what it takes to keep getting up and doing your best, even after repeated falls or mistakes. My kids were too busy racing around, jumping and landing with a flourish, pretending to be mogul skiers. There was even a phenomenal booty-shake victory dance. That’s fine.
But hopefully, somewhere in their brains, these nuggets of wisdom are buried, ready the next time they make a mistake on the soccer field or a test.
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BULLYING UPDATE

We talk about bullying sometimes here--but not in a defensive way.  Not because everybody with Moebius Syndrome gets bullied all the time, or ever did; not because for us adults, bullying that was done to us when we were younger is something that we can never get past, or that it has paralyzed us; no, not for those reasons.  Instead, we talk about bullying here because it is a fact of life.  It has happened.  It does happen.  It can scar a person. 

And I think too often our society sort of...well...took it for granted.  People sometimes suggested that this kind of thing--often softened by just referring to it as "teasing"--was sort of inevitable; it was a rite of passage; it was just part of life; people who did it couldn't help it, they were just young; people have to be able to "take it"; just ignore it and it will go away; etc.  But it's that kind of thinking that can eventually lead to Jonathan Martin/Richie Incognito scenarios.  And furthermore, new research continuously shows--bullying is not good for its recipients' health.  Read on about the latest bullying update:

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Kids who are victims of bullying have worse mental and physical health, more symptoms of depression and lower self-worth — and the effect seems to get worse as time goes on, according to new research.

Previous research has shown that bullying can lead to health problems, and the study in Monday's Pediatrics demonstrated that the effects of bullying can actually snowball over time.

The researchers followed 4,297 children in Los Angeles, Birmingham, and Houston at three points: fifth, seventh, and 10th grades. The kids were asked about bullying and also completed questionnaires designed to look for symptoms of depression, low self-esteem and poor physical health.

Those who were being bullied had high levels of depressive symptoms, low self-worth and more problems with basic physical activity. And the longer the bullying went on, the worse the problem was. For example, 10th graders who were being bullied reported problems, but the worst problems were reported by kids who experienced bullying in fifth and seventh grades, too. Almost half of these continuously bullied kids had poor psychological health — seven times more than kids who had never been bullied.

"We're seeing that the effects of bullying get worse over time," said Dr. Laura Bogart, a social psychologist in the Division of General Pediatrics at Boston Children's Hospital and lead author on the study. "This gives more evidence that it's important to intervene early."

So what should parents do to protect their kids? Talk to them and know the signs of bullying, suggests Dr. Bogart. Unexplained cuts and bruises or signs of troubled mental health — unexplained anxiety, or a child who suddenly doesn't want to go to school — are all red flags.

Simple questions for the child like "how was your day at school?" can help assess if a child is having issues.

"Hopefully [parents and other adults] can step in and stop some of these bad effects of bullying before they happen," she said.

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5 STUDIES YOU MAY HAVE MISSED

What's the latest in health research?  What is being found out lately that can help you with your health?  Here's the latest, provided by CNN:

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Here's a roundup of five medical studies published this week that might give you new insights into your health, mind and body. Remember, correlation is not causation – so if a study finds a connection between two things, it doesn't mean that one causes the other.

That car comes with an obesity feature
Canadian Medical Association Journal
Do you own a car? A computer? A TV? You're probably moving less, sitting more and buying bigger pants than someone who doesn't.
After analyzing data from more than 150,000 people in several countries, researchers said owning all three was associated with a 31% decrease in physical activity, 21% increase in sitting and a 3.54-inch increase in waist size. They also found a 400% increase in obesity and a 250% increase in diabetes among owners of these items in low-income countries.

While this might seem like a "no duh," the results foreshadow some significant health problems for developing countries. "With increasing uptake of modern-day conveniences... low- and middle-income countries could see the same obesity and diabetes rates as in high-income countries," says lead study author Scott Lear.
You should practice seeing better
Journal: Current Biology
You hit the gym to improve your physical fitness, and do Sudoku to increase your cognitive abilities. So why wouldn't you be able to improve your eyesight with a little practice?
After doing a visual training program for 25 minutes a day, four days a week, for two months, seven baseball players at the University of California, Riverside, improved their eyesight to 20/7.5 - meaning they were able to read text from three times farther away than someone with 20/20 vision.
"The goal of the program is to train the brain to better respond to the inputs that it gets from the eye," said study author Aaron Seitz. "As with most other aspects of our function, our potential is greater than our normative level of performance."
Seitz believes the program helped the university baseball team bat better during their season. Maybe the Houston Astros will sign up next.
You're more likely to get tested when you're tired
Journal of Consumer Research
This seems counterintuitive, right? We know our self-control diminishes as we use it - meaning you're more likely to eat a cookie if you've already turned down a brownie and a piece of cake. But in five experiments, researchers found people make better decisions about their health when they're feeling tired or run down.
For example, in one experiment, people with a family history of kidney disease who felt "depleted," were more likely to indicate they'd get tested after reading a warning message than those who were feeling fine.
Apparently when our bodies are weak, we're more worried about our overall well-being. That's when consumers start to value products that emphasize safety features, such as sunscreen, the study authors concluded.
A pizza herb could stop norovirus
Journal of Applied Microbiology
Yep, the infectious vomiting disease that sickened hundreds on cruise ships this year could be taken down by America's favorite food. More specifically, it could be taken down by carvacrol, a substance in oregano oil that gives the herb its distinctive smell and flavor.
Scientists at the University of Arizona found carvacrol breaks down the norovirus' tough outer layer, which would allow another antimicrobial substance to enter the inner part of the virus and kill it.
Unfortunately, loading up on pizza before your next cruise won't help, the study authors say. You need a highly concentrated amount of carvacrol, and eating that would cause a burning sensation and numbness in your tongue. Instead, the researchers recommend more research to see if the substance can be used in sanitizers or disinfectants.
Read more from Medical Daily
Watch for signs of stroke during a storm
Presented at the International Stroke Conference
Researchers at the Yale School of Public Health analyzed the medical records of 134,500 stroke patients and matched them with local weather data. The scientists found large temperature changes and higher humidity were associated with an increase in stroke hospitalizations, and that lower average annual temperatures were linked with more stroke hospitalizations and higher stroke mortality rates.
“This study suggests that meteorological factors ... may be stressors that increase stroke risk," study author Judith Lichtman told Forbes.

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GOOD NEWS DEPT

Those with disabilities and physical differences have found the spotlight recently.  Here is one example:

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On a dewy July morning last summer, Amy Wright looked on with mild concern as her son, Beau, ran across a hilly field in the Appalachian mountains outside Beckley, W.Va. The pair, along with Amy’s husband, Ben, were among many on the hillside as cameras rolled on Beau’s first scene in the independent film “Little Accidents.”
The role was a momentous opportunity for Beau, who celebrated his ninth birthday the day before arriving on set. But it was an even more bittersweet experience for his parents, who looked on as their son took on a part few people can play — a young boy with Down syndrome.
Amy’s worry that morning wasn’t merely that of a mother watching her son take his first step in front of the movie camera. It was also that of a mother who has watched her son overcome being born blind, not being able to walk until he was 3 and living day to day with an intellectual and developmental disability.
But most of all, the role gave Beau the opportunity to show the world that those with Down syndrome are capable of much more than many think possible.
‘Little Accidents’
In “Little Accidents,” which premiered at the Sundance Film Festival last month, Beau plays James, a role conceived by writer/director Sara Colangelo specifically for a young boy with Down syndrome. Following a devastating mining accident that kills their father, James must protect a secret with his older brother. The drama charts the lives of several families in the coal-mining town in the wake of the tragedy, which left only one survivor (“Milk’s” Boyd Holbrook). Elizabeth Banks (“The Hunger Games”), Josh Lucas (“Sweet Home Alabama”) and Oscar nominee Chloe Sevigny (“Boys Don’t Cry”) also star.
Beau’s foray into acting began when the “Little Accidents” part seemingly fell into the Wrights’ lap. In 2013, Amy and Ben, both of whom have backgrounds in theater, wrote and performed, respectively, a song called “Be the One” to raise awareness about the benefits of establishing one-on-one relationships with those born with intellectual and developmental disabilities — even recruiting “Glee’s” Lauren Potter to star in a music video shot in Wilmington, N.C. last March.
Following filming, the couple got to know Potter’s agent and were soon notified of a national casting call looking for middle-school-aged boys with Down syndrome for an upcoming project. Although Beau was only 8 at the time, they were encouraged to respond. As Amy was told, “the opportunity was like winning the lottery because roles for kids with disabilities are few and far between.”
Ben, who originated the role of Jack in Stephen Sondheim’s “Into the Woods” on Broadway and has appeared in such films as “Born on the Fourth of July,” never had the intention of ushering his kids into the entertainment business.
“I certainly wouldn’t encourage them to do it professionally,” he said. “People see the show part of show business, but forget that it is still a business.”
But after giving it considerable thought, the Wrights proposed the idea of auditioning to Beau, whose response surprised them. Although he had never expressed a desire to act, Beau, who loves watching movies on the family TV and his Kindle, approached them the next day and said he wanted to do “his movie.”
“Right after that, he worked with his sister Emma Grace and learned the lines and (we) got out the video camera and taped him doing it,” Ben said. “He wanted to do it again and again and again. He seemed to like it.”
Shortly after agreeing as a family to pursue the role, the audition process began with submitting the tapes of Beau working with the lines. Soon, the Wrights were contacted by the film’s director and producers, who were interested in setting up Skype video conference auditions. By May, the role was down to just Beau and another boy. By June, the part was his.
“I remember the night we got the call at like 9:30. Beau had gone out with his dad to get his sisters, and when they got back, I was out in the driveway jumping for joy,” Amy said, laughing. “He was so excited.”
After scoring the role, Ben said something interesting happened with his son. Beau began to understand and associate that something he was going to record in real life was going to end up on a screen like the shows he loves to watch.
“That is fairly sophisticated to connect those dots, and I feel like he did,” he said.
From West Virginia to Park City
The road to production was a swift one for the Wrights, who were packing up and heading to West Virginia by mid-July for a six-week shoot.
The first day of filming, Beau and his parents had to travel by ranger mobile at 6 a.m. to the remote hillside set for several hours of filming.
“That first day, heading through the woods, was tough for Beau,” said Ben, who sometimes had to carry his son.
As production went on, Ben and Amy could see that Beau was responding to the new experience of being in front of the camera.
“It is difficult with Beau because you don’t always know what he is thinking, but you could tell that he was into it,” Ben said. “I definitely think it gave him a sense of, ‘Gosh, something is expected of me here over and above what I typically do.’”
Amy said Beau’s cheery disposition was a favorite on set.
“It is a very heavy script, and everybody would say that Beau brought such a lightness to the set because he only has some understanding of the gravity of what the whole movie was about. So when he came to set, he was happy,” Amy said. “When other people would come out of scenes that may have drained them, Beau brought a real fresh energy and everyone loved it.”
Beau’s role as James required its own emotional spectrum, though. Filling the shoes of the tag-along younger brother, Beau has humorous and playful moments with his brother, played by 17-year-old Jacob Lofland (“Mud”), but must also muster the emotion for emotional scenes as the film moves along.
The brotherly bond Beau built with Lofland, both on screen and off, is what his parents point to as the most beneficial part of “Little Accidents” for their son, especially since Beau has three sisters — Lillie, Emma Grace and Ditty, who also has Down syndrome — at home. After finding out Beau had been cast just two weeks after him, Lofland started Skyping with his new on-screen brother to break the ice. Finally meeting in-person on set, the boys became inseparable, sharing the majority of their scenes and spending their downtime playing games.
“After we met that first day, we instantly hit it off,” Lofland said. “I’m so glad he liked me because Beau is so fun to be around.” Lofland said when he arrived at his hotel in Park City, Utah, for the film festival, the doorman told him someone was waiting for him. Opening the door to his room, Lofland found Beau, who came running towards him, arms open, screaming, “My brother!”
Since filming has ended, the boys have remained close, texting and Facetiming several times a week.
“I’m always gonna stay in touch with Beau,” Lofland said.
Sundance, which Amy said was the “best adventure ever,” was a big reunion for the cast and crew, who became like a family during production.
“Being downtown in Park City, where there was such a creative vibe with so many people from the industry, was amazing,” Amy said. “Sharing it all with Jacob is what made Beau happiest.”
The film’s premiere at Sundance garnered scattered praise, with The Hollywood Reporter calling it “a compelling but not self-important small-town drama” and IndieWire admiring Colangelo for an “impressive” feature film debut. But for the Wrights, being part of “Little Accidents” is something they hope will have even farther-reaching effects.
“Being the parents of kids with special needs, you become advocates,” Amy said. “For kids like Beau to be in roles like these is a great way for the world to see a 9-year-old boy on the big screen with Down syndrome that can (be physically active) and rattle off these lines. Kids just like him are capable of doing this,”
Beau, who got to walk down the red carpet at Sundance and sat through the entire film’s screening like “a little prince,” according to his mom, is still starstruck with seeing himself on the big screen.
“It was really cool!” Beau said. “I love being a movie star.”

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And here's another:

Skier Alex Bilodeau says it’s his brother with cerebral palsy who inspired him in his quest for Olympic glory.
Bilodeau took the gold medal Monday for freestyle skiing moguls at the Sochi Games, repeating his victory four years ago at the Vancouver Olympics.
The Canadian athlete promptly celebrated by embracing his brother Frederic, who has cerebral palsy and was enthusiastically cheering on the sidelines.
“When I see him, he’s my everyday inspiration,” Bilodeau said of his brother who’s become a recognizable face in Canada in his own right after a similar embrace at the Vancouver games.
“I wake up in the morning and it’s rainy outside and I don’t want to go train, I don’t want to go out and ski. I look at my brother and if he had that chance he would go, he would grab it,” Bilodeau said. “With the motivation that he has, if he would be a normal person like I have the chance to be, he would be three times Olympic champion. There’s no doubt.”
The gold will cap Bilodeau’s skiing career. He told Canada’s Global News that he plans to retire after the Sochi Olympics.

MOEBIUS SYNDROME IN THE NEWS: WORKING ONE DAY AT A TIME

A family in the UK recently seeks to raise money for their young daughter with Moebius Syndrome.  Fund-raising--it can be an important thing, and a way to raise awareness and help your family do more for your Moebius child or relative.  Something to think about.  Read more about what these guys are doing:

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An Aylesbury family are hoping to raise as much awareness of their baby's rare condition as possible today.
Back in October, we told you about Isabella Young who has Moebius Syndrome, which means she has no control over the left side of her body.
Today they're raising money for Moebius Research.
Mum Sara Hill told us why research needs to happen:

"Quite a lot of problems and illnesses can be picked up during a pregnancy, but this is one of those that can't be.
"You have to rely on a clinical diagnosis and it would be so great to find out about this when they're younger."

Today's event at Bucks County Council's Sports & Social Club in Aylesbury from 12-4 sees local businesses with stalls, games and food, as well as a raffle.
All the cash raised will go to researching the rare condition.
It took several weeks for doctors to work out what was wrong with Isabella, diagnosing several conditions before one consultant at the John Radcliff Hospital in Oxford spotted the symptoms.
She's now under 11 consultants at three different hospitals, already having made 3 trips just this week.
The condition also means she can't blink with her left eye or move her eyes from side to side. She'll soon have to be fed directly through her stomach.
There are just 200 Moebius patients across the UK, so very little is known about it or even understood by doctors.
The Moebius Research Trust is based in Scotland and aims to find answers to both doctors' and parents' questions.
Sara added:

"Just to have a reason why she is the way she is, what the problems are.
"And that's what the charity are aiming to do. Aiming to find the causes. even, not a cure as I know not everything can be, but to stop people being prevented being diagnosed."

To find out more, visit the Facebook event page here: https://www.facebook.com/events/472401282875860/?fref=ts
Sara told us what a breakthrough would mean:

"To have some guaruntees, to not be told they don't know something.
"If I ask them 'will she walk?' and they say they don't know - if they had more knowledge they might be able to give me that answer."

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MOEBIUS SYNDROME IN THE NEWS: MAKING MOEBIUS "THE NEW NORMALITY"

A terrific article on the founder of the Many Faces of Moebius Syndrome website and one of the biggest ambassadors and awareness-spreaders of Moebius anywhere--Tim Smith.  Read on:

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From his basement apartment in rural Spotsylvania County, Tim Smith is reaching out to others—across the globe—who have the same unusual disease he does.
At first, the “power of the Internet” allowed him to hear from other Americans with Moebius syndrome, an extremely rare neurological disorder that causes facial paralysis.
These days, his keystrokes connect him with a worldwide audience.
The Facebook page he started, the Many Faces of Moebius, had 2,000 followers in February 2012, when he was featured in The Free Lance–Star.
Less than two years later, on Jan. 24—the day people wore purple shirts or carried balloons of the same color to bring awareness to the disease—the audience had more than tripled.
Smith estimated that almost half of his site’s 6,403 followers live outside the United States.
“Facebook has opened up a new medium for people to connect, all over the world,” he said. “The only problem is the language barrier. You have to be careful [because translations aren’t always accurate]. I actually have insulted people before.”
‘OUT OF THE DARK AGES’
Despite the occasional mishap in messages, Smith has developed a global platform.
He’s encouraged people to do interviews with local media outlets in an effort to “take Moebius syndrome out of the Dark Ages and make it into a kind of new normality, if you will.”
He shares links to all those stories on Facebook, as well as hundreds of photos.
Jennifer Allaby of Canada is one of 35 people from 12 nations whom Smith named a global ambassador. She recently told her story in a radio segment and was amazed by the response.
“This has been a wonderful experience, and I’ve even found three other Moebians right here in Saskatchewan,” Allaby said. “After nearly 45 years, I will finally meet another Moebian. Incredible.”
Those with the syndrome, pronounced “mo-E-be-us,” can’t smile or frown, laugh or grimace, blink or move their eyes from side to side because of the facial paralysis.
One mother in England said her infant son “constantly looks grumpy” because of the paralysis.
Smith worked with Fresh Printz, a Culpeper County company, to print and distribute shirts about the unusual condition.
One of them reads: “We smile from our hearts.”
IN HONOR OF HANNAH
It’s not known how many people have the syndrome. Researchers estimate that the condition affects one in every 50,000 to 500,000 newborns, according to Genetics Home Reference.
Moebius is considered genetic and is one of more than 7,000 rare diseases. The syndrome also causes limb deformities and problems with speech, vision and breathing.
Smith is 50, has a speech impediment and talks fast. That’s why electronic communication has worked so well for him.
Online, he often shares his story: that he was “labeled as being retarded” at birth and that fellow students and teachers made fun of the way he looked and talked.
He grew up in Alexandria, where his parents were told repeatedly that their son wouldn’t live to see adolescence. As it turned out, they both died of cancer before he was 15.
He was in his early 40s when he came across the diagnosis “Moebius syndrome” in his medical file. He’d never heard the term before. As he researched, he looked for others with the disease.
He met the mother of Hannah Devine, a child who was born with Moebius and died before her second birthday. Smith stood over Hannah’s grave in Spotsylvania, wondering why their lives turned out so differently.
“I was spared and she wasn’t,” he said in 2012. “Why did I deserve to live?”
He pledged to educate others in honor of Hannah and others like her.
‘THANKS TO YOU, TIM’
Smith works as a cashier at the Walmart near Wilderness and spends three or four hours a day on Moebius syndrome websites. He’s big on photo galleries, and people in Venezuela and the Philippines, South Africa and Australia respond to his request for photos of activities.
“We took in approximately 730 photos from people all over the world showing support for Moebius syndrome,” he said about international awareness day.
The site has 152 standing profiles of people with the disease, and Smith spotlighted one or two “holiday heroes” each day from Nov. 1 to Jan. 24.
He doesn’t earn a dime for his efforts, just the gratitude of those who benefit from them.
“Big thanks to you, Tim, as your job just never ends,” wrote Kay Cheryl Jacobs of the western cape of South Africa. “I know it’s rewarding but you really put in so much, while all of us sit back, click on the link and find updates on the website.”

Tim Smith has established the Many Faces of Moebius Syndrome online and on Facebook. Both pages have the same name.
The website features profiles of people in its community, global ambassadors who try to educate others through the media and those selected as holiday heroes. The site also has photos of Moebius syndrome angels, mostly children, who have died.
The Facebook page shares the links to stories about Moebius syndrome and hundreds of photos of support groups from the Philippines, videos from Venezuela and lots of purple-shirt wearers across the United States.
ON THE NET: manyfacesofmoebiussyndrome.com

FOR ALL MOMS AND DADS--AND ESPECIALLY FOR MOEBIUS MOMS AN DADS

You don't have to be a supermom or superdad, and run yourself into the ground.  One mom recently explained why.  And maybe this could spark a good discussion--how do some of you Moebius moms and dads out there do it?  How do you accomplish as much as you do, but stay sane at the same time?  Share.  But first, read on:

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chel Macy Stafford had her epiphany while she was out for a run. I have a natural flair for the dramatic, so mine was on the way to the emergency room in the middle of the night about two weeks before Christmas.

Thankfully, after a few hours on an IV, some medication and a referral to a gastroenterologist, they sent me home to bed, where I — finally — rested for a few days. My mother had been warning me for months: You’re doing too much. You need to slow down. You are going to make yourself sick. I read Katrina Alcorn’s elegy to stressed-out working motherhood, “Maxed Out,” and related to many aspects of it. When she said she just wanted the ride to stop, I nodded in understanding. I’ve said that to my husband, more than once.

So really, I shouldn’t have been surprised that my mother was right (she almost always is). Trying to juggle home and work, and trying to give my kids some of the benefits of a stay-at-home mom even though I had a full-time job, took a toll.

It wasn’t work that stressed me out or pushed me over the edge. Work is fine.  I’m blessed with an understanding boss. I love what I do. I also have a husband who completely splits the kid stuff with me and does his fair share around the house.
It was everything else: the volunteering, the shuttling kids to activities and appointments, the feeling that I had to be everything to everyone all the time, or I’d be a miserable failure. I did this to myself by trying to be supermom. No one expected— or asked— that of me. It was completely self-inflicted.
After my little ad­ven­ture, my mother told me that it is time for me to take off my cape. I’m taking her advice (remember, she’s always right) and following Stafford’s example to try to live a less jam-packed life. Instead of looking for ways to “do it all,” I am giving myself the gift of doing less, and not feeling bad about it. I can’t do it all, and more and more I realize, I don’t want to.
I’m going to learn how to say no to things so I can spend more quality time with my family, or curled up with a book and a cup of tea.  I will turn off my phone in the evenings and on weekends when it’s possible, and give my home life my full attention when I’m there. My illness, thankfully, was not life-threatening. I’m choosing, though, to make it life-altering.
Stafford’s book “Hands Free Mama” is divided into 12 chapters, with the idea that you can become less distracted and harried in 12 months. This is my version of a 12-step program. Each month I will report back on the chapter I’ve worked on and talk about successes and failures along the way.
I’m taking the steps out of order, though. Stafford has going public with your choice as  part of the second step, and I’m doing it first, here, to keep myself accountable. I’d love to hear how others accomplish this. Share your stories in the comments, or by e-mail, about trying to do it all or trying to lean back a little and slow down. I may incorporate them in a  future update on the Hands Free journey.

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I JUST THOUGHT THIS WAS INTERESTING DEPT

So who doesn't do it?  Your bedside alarm clock wakes you up in the morning...and you hit snooze (and maybe even do so more than once).  And us folks in the Moebius community are no different than anybody else--we do this too.  But now they're saying--hitting snooze too often is really not good for you.  How so???  Read on:

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Beep, beep, beep. Nothing pushes my buttons quite like that irritating sound coming from my bedside alarm clock in the morning. Luckily, my ticker comes with a snooze feature. Just one tap and I buy myself another nine minutes of slumber.

The rumor: Slapping the snooze button actually makes you more sleepy

I've always assumed that those extra snooze-induced minutes of rest are good for me. But recently I've heard they're not helpful -- in fact, it's said hitting the snooze button can actually make me more tired throughout the day. Is it true?

The verdict: If you hit snooze, you may lose (productivity, that is)

When you doze off after your alarm wakes you in the morning, you're actually setting yourself up to feel less alert and productive later in the day.

"When you hit the snooze button repeatedly, you're doing two negative things to yourself," says Robert S. Rosenberg, medical director of the Sleep Disorders Centers of Prescott Valley and Flagstaff, Arizona.

"First, you're fragmenting what little extra sleep you're getting so it is of poor quality. Second, you're starting to put yourself through a new sleep cycle that you aren't giving yourself enough time to finish. This can result in persistent grogginess throughout the day."

Scientists have identified the culprit behind this stupor that's brought on by a too-brief slumber: sleep inertia. The National Sleep Foundation defines this state as "the feeling of grogginess and disorientation that can come from awakening from a deep sleep."

It slows down your decision-making abilities, impairs your memory and hurts your general performance once you do get out of bed. Even worse, coffee and a cold shower can't combat it: It can take up to an hour and a half to shake off sleep-inertia grogginess.

According to Rosenberg, that's because the snooze button messes with your brain hormones. "You're throwing off your circadian cycle," he says. Disrupting the circadian cycle can impair your ability to feel awake during the day and sleepy at night.

So, is banishing the snooze button enough to make you feel your best during the day? Nope, says Rosenberg. The urge to sleep a bit longer is really a symptom of a larger problem.

"Most people are doing this because they're not getting enough sleep on a daily basis," he says. This chronic sleep deprivation (which is defined as six or fewer hours of sleep a night) is called "social jetlag." Over time, some sufferers have been shown to have a higher body-mass index and an elevated risk of diabetes.

If hitting the snooze button isn't the key to better sleep, what is? Rosenberg has a few suggestions to help you stay alert and refreshed:

Turn in earlier, consistently. Rosenberg suggests going to bed a half-hour earlier than you have been. Over time, he says, this will reduce your overall sleep deprivation. And if it doesn't? Turn in an hour earlier.

Banish computers from the boudoir. Devices like smartphones, digital tablets and laptops emit blue light that hurts your sleep. "The exposure to blue-light-emitting devices results in a delay in melatonin production," says Rosenberg. So give yourself a tech curfew: Turn off those electronics 90 minutes before lights out to help promote sounder sleep.

 Make mornings a scavenger hunt. If you're still having trouble getting up, hide the alarm from your groggy early-morning self. "Put that alarm clock where you can't reach it," Rosenberg advises. That search to put an end to the annoying beeping sound is sure to foil your desire to sneak in more Z's. It may seem silly, but it's doctor-approved.

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MOEBIUS SYNDROME IN THE NEWS: AN UPDATE

So do you remember Warren Armstrong--the little boy from the UK who has Moebius Syndrome?  We met him last week.  Well, now the news stories on him are multiplying.  Another news service in the UK has put the spotlight on him, and thus brings us even more details about him and his courageous family.  One interesting thing that comes out of this article--it reports that Warren's doctors say they have no idea how Moebius will affect him once he grows up.  See, everybody--including, and perhaps especially, meaning medical professionals--needs more information concerning Moebius.  Let's keep up the good work!  Meanwhile, read on:

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Warren Armstrong is the boy who can't smile. At four-months-old he was diagnosed with an extremely rare condition called Moebius Syndrome which causes facial paralysis. It means he struggles to pull any facial expression.
Warren's mum, Janine Atkinson, said: "It makes him look unfriendly, people class it as grumpy because he can't smile like we would. His eyes go inwards because the nerves aren't connected to help move them from side to side like we can - he constantly looks unhappy when he's not."
The condition's so rare that only 20 youngsters in the UK are thought to have it. It's characterised by facial paralysis and the inability to move the eyes from side to side - or even blink. Patients may also have limb or chest wall abnormalities.
For Warren - its meant he's been born with deformed hands. But it wasn't until he was four-months-old that doctors finally diagnosed him. One of the most difficult things for his family has been trying to read his emotions.
Janine said: "It was hard at first, do we know if he needs a bottle because obviously he wasn't cooing or anything, but you'd see it in his eyes so you'd learn you had to look in his eyes to see if he was happy or sad."
Diana Farragher is a chartered physiotherapist who has spent years looking into the condition. She's travelled the world seeing patients with Moebius syndrome and now helps youngsters using a variety of therapies including electrodes on the face which pick up nerve signals in the face.
She said: "There are therapies that can be used to make sure the muscles are stretched and they learn to speak and socialise."
Warren's due to have operations on both his hands and his eyes
But doctors have no idea how the condition will affect him in the future
"When Warren's older I feel it could be difficult for him to get a job because when we go for interviews we smile and its all about your facial expressions -more than you talk what people are attracted to," says his mum. "So the awareness we really want is we're absolutely fine on the inside its just the outside is a bit different. My hopes are that he can go to mainstream school and once he's had his surgery help him along his way, not be singled out cos of Moebius syndrome and hopefully this awareness I'm trying to get out will make people understand that he is like everybody else."
For his family - its all about making people more aware of his condition
He may not be able to smile - but for his mum, he's still their happy bubbly little boy.

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BOOKS FOR KIDS THAT FEATURE DISABILITIES

Maybe these would be good for your child--either to help him or her understand others with physical differences, or, if your child has Moebius or a similar difference, to help them understand:  they are not alone.  Read on:

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Alongside the famed Caldecott and Newbery awards for children’s literature, three books are being honored for focusing on the disability experience.
The books — which include stories of a wounded soldier, a princess with a deformed foot and a look at medical experimentation by Nazi doctors — were named winners of the Schneider Family Book Awards this week.

“A Splash of Red: The Life and Art of Horace Pippin” is one of three winners of this year’s Schneider Family Book Awards, which honor children’s books that focus on the disability experience. (Random House)

The honor is presented to authors and illustrators “for a book that embodies an artistic expression of the disability experience for child and adolescent audiences.”
Three Schneider awards — one for books aimed at kids up to age 8, another for stories targeted to children ages 9 to 13 and another for teen books — are given annually by the American Library Association at the same time the group awards the Newbery and Caldecott Medals.
The picture book “A Splash of Red: The Life and Art of Horace Pippin,” written by Jen Bryant and illustrated by Melissa Sweet, won in the youngest division of the Schneider awards for depicting the experience of African American folk artist Horace Pippin as he struggles to paint again after being injured in World War I.
“Bryant and Sweet’s stunning picture book biography effectively depicts that perseverance and courage are essential ingredients of living with a disability and realizing your dreams,” said Alyson Beecher, chair of the Schneider awards committee.
Meanwhile, the princess fantasy “Handbook for Dragon Slayers” written by Merrie Haskell won in the middle school division for the tale which follows a long-sheltered princess who ventures out on a dragon-hunting quest despite her physical limitations.
In the teen category, “Rose Under Fire” written by Elizabeth Wein, was honored for depicting a young pilot who is captured by the Nazis and survives with the help of Polish political prisoners who were subjected to medical experimentation by Nazi doctors.
The awards were announced Monday at the American Library Association’s meeting in Philadelphia.
This year’s Newbery Medal for children’s literature went to Kate DiCamillo for “Flora & Ulysses: The Illuminated Adventures” and the Caldecott Medal, which is given for picture books, went to Brian Floca for “Locomotive.”

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IT WAS HARD FOR HER TO SPEAK UP--BUT SHE DID IT

More wonderful stories emanating from Moebius Syndrome Awareness Day.  Here's a story about a mom and her son Zac, from the UK.  Zac has Moebius Syndrome.  His school did a lot to support him.  And his mother got up in front of everyone and talked about Moebius Syndrome and what it meant.  That wasn't easy for her to do--but she did it.  Read more about Zac, his mom, and his school which has been so helpful to him:

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A mum from Rothwell has helped raise awareness of her son’s rare medical condition by holding a fundraiser at his school and talking to classmates.
Zac Freshwater, four, was born with a condition called Moebius Syndrome, which affects the nerves in his lower face and means that the youngster has a small chin and tongue.
As a result, Zac struggles to drink liquids – although his mum Gemma Summerfield says Zac is just like any other four-year-old.
On Friday, Gemma visited Zac’s school, Rothwell Victoria Infants School, which had agreed to let pupils wear purple clothes for the day in a bid to help raise money for the Moebius Syndrome Foundation.
Friday was national Moebius Syndrome Awareness day.
Gemma said: “The school have been really good. We held a cake sale and sold some other items and between that and the wear purple day we managed to raise £444.
“However, the school also invited me to go in during their assembly and talk to the children about Moebius Syndrome.
“It was hard work speaking in front of so many people but hopefully they understand a little bit more now.
“I wanted the other children to be more aware about Zac’s condition as it is quite rare and they might not understand why he needs things like a feeding tube.”
Because of his condition Zac cannot drink liquids, so mum Gemma says she has to regularly give him a feeding tube so he can stay hydrated.
Zac started school in September and is very much enjoying it, says his mum.
She added: “The school has been really good and understanding.
“When he’s running round with his friends you would never know he has the syndrome.”
He lives in High Street and has one younger sister, Amelia, one, and two older step-siblings Madison, eight, and Reggie, five.
or more information about the condition visit the website www.moebiussyndrome.com.
Rare syndrome without a cure
Moebius Syndrome has no cure, although symptoms can be improved with therapy and surgery.
Physical and speech therapy can improve motor skills and co-ordination and can lead to better control of speaking and eating abilities.
Surgeons can also transfer muscles from the thigh to the mouth to give sufferers the ability to smile.

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