MOEBIUS SYNDROME IN THE NEWS
Today, it's our new hero, Abbi Forester, from Scotland:
"Abbi Forrester's parents know without doubt when she is happy - despite never having seen her smile. The four-year-old suffers from a rare illness that means she is unable to form any facial expressions, so strangers often think she is unhappy.   But her mother Linda knows differently by her daughter's laughter and giggles when she is playing.
The 37-year-old from Kirkcaldy said: "I found it hard when Abbi was younger. When you smile at a baby and they don't smile back it is harder to feel a bond.  "It's still difficult when we are in the supermarket and people come up and say, 'give me a smile', 'where is my smile?'
"But I know when she wants to smile, you can hear it in her voice, you can see that sparkle in her eye. And when she gives me a cuddle, you hear her giggle or she says I love you Mummy, it doesn't matter that she's not smiling at all."
Abbi is one of just 14 people in Scotland thought to be living with Moebius Syndrome, which paralyses all the nerves in her face.  Her mother was told by doctors there was a problem with Abbi at her 20-week pregnancy scan. Abbi had club feet, which pointed her legs inward, a known sign of Moebius Syndrome. When she was born at Forth Park Hospital, she was limp because of the damaged nerves in her face and upper body. 
Doctors gave her anti-fitting medication, believing she was having seizures because her eyes rolled around in her head.  In fact, the paralysed nerves in her eyelids meant she couldn't move them. Her rolling eyes were her way of blinking, and she slept with her eyes wide open.  At 12 days old Abbi was transferred to the Royal Hospital for Sick Children in Edinburgh, where she was diagnosed.
Her mother, who was taken to a side room with husband Greg to be told the news, said: "I was concerned that Abbi was going to be severely disabled or brain damaged. When I found out what it was, I was almost relieved. It could have been a lot worse."
The paralysis in Abbi's throat meant she had to be tube-fed for the first two years of her life. Moebius sometimes affects the skeleton and so she has one hand smaller than the other. She has low-set ears, an arched palate and a deformed tongue. But the most obvious symptom is her inability to frown or smile. She cannot close her mouth because her jaws aren't strong enough to pull together.  Her mother, a production operator for drinks firm Diageo, said: "As her mum I just know when she's smiling. It may not be on her face but she is smiling inside."  The Forresters have been helped to cope with Abbi's condition by the Moebius Research Trust, a charity that provides advice and information on the rare symptoms. The family say the trust has helped them to feel less isolated."

WORRIED ABOUT OVERSCHEDULING YOUR CHILD?
Well, for you moms and dads out there, just maybe...don't be.  Research suggests very, very few children out there are truly frazzled and tense from being too busy.  Rather, too many might not have enough to do:

"Nick Nunley spent his childhood years on the go. It started with hockey in first grade, and later expanded to other sports, including baseball, cross country, basketball and golf. Now a senior in high school in Illinois, Nunley focuses on hockey and golf, sometimes playing on two or three hockey teams in one season. He also heads the school's law club. Most weeks, Nunley said, he spends 15 or 20 hours participating in extracurricular activities.

In some circles, a schedule like Nunley's is a cause for concern: Could he be doing too much, overscheduling himself to the point of stress? Authors of books, such as "The Over-Scheduled Child: Avoiding the Hyper-Parenting Trap" (St. Martin's Griffin, 2001), have worried that parents and kids are becoming frazzled and anxious in the face of constant activities. The image of the overstructured child with no time to play is a common media refrain.

But Nunley and his mother Vanessa, who blogs at moreismoremom.wordpress.com, say they're happy with the schedule they set. Trips to practices and games were "some of the best moments of our family life," Vanessa Nunley told LiveScience. And for Nick, who is headed to DePauw University in Indiana next fall, it's the downtime that's no fun.

"My hockey career just ended and it's not quite golf season yet, so I'm a little bored not having things to do all the time," Nick Nunley told LiveScience. [Sidebar: Parent and Expert Tips for Juggling Busy Kids]

Despite fears of overscheduling, new research suggests that busy kids like Nick may not have much to worry about. While it's true that the benefits of involvement in activities decrease when kids are extremely busy, only a small number of children and teens take part in that many extracurricular activities. Far more kids take part in no structured activities outside of school at all, said Jennifer Fredricks, who presented research on overscheduling March 31 at a meeting of the Society for Research in Child Development (SRCD) in Montreal.

"I'm definitely more worried about that group," Fredricks said.
Nationwide, being busy is not an epidemic. In 2006, SRCD published a report finding that kids spent on average just five hours in structured activities (besides school) each week. Just 3 percent to 6 percent spend more than 20 hours a week in extracurricular activities.
"It's a community that has a voice," Amy Bohnert, a psychologist at Loyola University in Chicago, said of the small percentage of kids who do struggle with taking on too much. "[Overscheduling] is real for certain people, but it's not the reality of most people in this country."

"When you innovate, you've got to be prepared for everyone
telling you you're nuts." -Larry Ellison
 

Here's some interesting health tips for today...

EMOTIONAL EATING:  IT CAN BE OKAY
Many assume that stress-eating, or I've-had-a-bad-day-and-therefore-I-want-chocolate eating, is horrible and makes you gain weight.  But not necessarily:
"Your idea of a good time after a bad day is a scoop of dulce de leche ice cream piled high atop a fudge brownie.
You aren't eating it because you're hungry, and you certainly aren't trying to get your recommended daily allowance of calcium. Nope, you're digging in because each creamy mouthful makes you feel inexplicably happy. Is that really so bad?
Surprisingly, emotional eating doesn't have to be a problem, says Michelle May, M.D., author of "Eat What You Love, Love What You Eat."
"Trying to talk yourself out of getting a mood boost from food only sets you up for a bigger overeating problem -- like bingeing," she says. You can comfort yourself with food and stay thin with these simple ground rules...
Tip 1: Emo-eat only what you love
Before you crack open the Ben & Jerry's, though, do what May calls the "Four-Really Test": Ask yourself if you really, really, really, really want it. "That will help keep you from grabbing whatever is in front of you," she says. "Reach for something you don't really want, and you're likely to eat more of it because it isn't satisfying."
That's the danger of answering a craving with a lighter version of what you want or with something else altogether. Not only does it defeat the purpose of giving yourself a gooey treat -- with the bonus of taking you back to a happy time in a way that only food can -- but it sets you up for a pig-out.
"If I'm not hungry, but I need a little pleasure in my life, isn't it ridiculous to eat a rice cake?" May asks. "Not only do I not need that fuel, but it's not even going to give me the pleasure." At all.
Tip 2: Make it blow your mind
Step away from that laptop, TV, or iPad, so you can focus fully on the treat you want to eat. Here's why: If you don't take a moment to enjoy everything about it, "then the real reason you're eating it won't be served," May explains, and you'll be more likely to give in to other high-calorie foods -- not to mention more of them.
Tip 3: Don't eat it on an empty stomach
Even if what you're dying for is a slice of carrot cake, play the part of your mother and tell yourself, Not till you've finished your dinner.
"If you've had a good meal with protein, vegetables, and a healthy fat, your dessert has a better chance of being emotionally satisfying," says Julia Ross, director of the Recovery System Clinic in Mill Valley, California, and author of "The Diet Cure." "But a lot of women skip meals to save calories and go straight to dessert, so their blood sugar spikes, then crashes, and they end up going back for seconds and thirds. Over time they aren't saving calories."
Going back for another and another also puts you scary-close to emotional eating's danger zone: overeating. "There's no harm in meeting any need with food -- unless it becomes chronic or extreme," Ross says.
Tip 4: Bag the guilt
It'll strip the pleasure right out of your splurge. "Nobody should feel guilty if they use food to celebrate or feel comfort," Ross says.

Besides, hating yourself for loving that chocolate shake will only make you need another (high-calorie) mood boost. It comes down to this: When you eat to feel good, let yourself feel good. Then move on."

 

THE DIVERSITY OF MOEBIUS SYNDROME
I was reading the other day about some of the questions those in the Moebius community have considering this condition.  Someone asked, for example, if others have problems sleeping, as did her son.  I know that problems with sleeping certainly do come up within our community.  Some, when they are young, have "night terrors."  Occasionally this goes on into adulthood.  I think I had some of that when I was young.  Fortunately, it died away as I got older.  (Although, as my wife will tell you, I do occasionally have strange dreams...though I think many people experience those!)

So some in the Moebius community have experiences with sleep problems.  Others don't.  Certainly those who do have these issues are the ones to ask about them.  But what this makes me think of is this:  it's a remarkable thing just how much diversity there is in the Moebius community. We all share some facets of the syndrome.  But we don't share all of them.  Different people with Moebius can have very different things.  Not all of us have club feet.  Not all of our eyes are affected in exactly the same way.  Which just goes to show you:  you want diversity???  We got diversity for you, right here.

The most important thing we have in common is that we all do look and sound different, and we all know what it means to confront society with that.  Our diversity means we can all help each other...yet in different ways.  Kind of a nice thing...

YET ANOTHER INSPIRING STORY
So check out the guy who's getting his own TV show on Oprah Winfrey's new network:
"Meet Zach Anner, a 26-year-old filmmaker from Austin, Tex., who just won his own television show on Oprah Winfrey’s new network. He’s handsome, smart and funny — oh, and he gets around in a wheelchair. Mr. Anner has cerebral palsy, “the sexiest of the palsies,” as he puts it in his audition video.
That line, along with a spoof of a failed TV show about yoga, has won him legions of online fans. (“This isn’t yoga,” he tells the camera as he writhes on the floor. “I’m just putting on pants.”)
In an online contest for a spot on “Your Own Show” on OWN, the video received more than nine million votes — and not because of Mr. Anner’s disability, according to Lee Metzger, the show’s executive producer.
“You do see the chair, and he has some erratic movements, ” Mr. Metzger said. “But once you start to talk to him, you see that his chair and his body are not what he’s all about. He’s a bright guy with a lot of great ideas, and he’s funny.”
Cerebral palsy is caused by abnormalities in parts of the brain that control muscle movements. In mild cases, patients may have slurred speech and motor impairments; in severe ones, the symptoms include irregular posture, spasticity and inability to walk.
Other performers have had cerebral palsy, among them RJ Mitte, who plays a teenager on the AMC series “Breaking Bad”; Josh Blue, who won the NBC reality show “Last Comic Standing” in 2006 with routines that mocked his own lack of motor control; and Geri Jewell, who had a recurring role on “The Facts of Life” in the 1980s.
But their disabilities appear less severe compared with those of Mr. Anner, who has spasticity in all four limbs.
A native of Buffalo, Mr. Anner said his parents insisted he attend regular schools and be treated just like other children. “My family is weird in a very good way because I was always exposed to the arts,” he said. (His mother teaches acting and playwriting at the University at Buffalo; his father is a bartender and videographer, with a passion for travel.) “Everything was always about finding creative energy and finding different ways to do things.”
By his own account, he does not lack self-confidence. At a book signing for Bill Clinton’s “My Life,” Mr. Anner ignored the publicist who declined his request for an interview with the former president — “Being 20 at the time, I wasn’t going to listen to that,” he said — and shouted his question: “Being an environmentalist, how do you intend to save the trees with a book that’s this long?”
Mr. Anner says Mr. Clinton was gracious in his reply, joking that perhaps the 1,008-page book should have been printed on recycled plastic."

Read the whole thing.  I think there's several things we with Moebius and/or facial differences can learn here.  Note that it IS possible to see past differences; when it came to Zach Anner, people realized--he's a funny, intelligent guy.  Notice also that Anner and his family were not afraid of getting out there, doing things, saying yes to life.  That's why he attended regular schools and was not afraid to submit a video for Oprah Winfrey's contest.  It's inspiring.  Zach Anner did it.  He achieved.  We can too.

DON'T BE AFRAID TO HIT THE POOL
Want good exercise?  Is running tough on your legs, knees, and joints?  Consider swimming.
South Carolina researchers who followed thousands of people found that those who regularly swam lived longer.

OR MEDITATE
It can be good for reducing your sensitivity to pain:
"You don't have to be a Buddhist monk to experience the health benefits of meditation. According to a new study, even a brief crash course in meditative techniques can sharply reduce a person's sensitivity to pain.
In the study, researchers mildly burned 15 men and women in a lab on two separate occasions, before and after the volunteers attended four 20-minute meditation training sessions over the course of four days. During the second go-round, when the participants were instructed to meditate, they rated the exact same pain stimulus -- a 120-degree heat on their calves -- as being 57 percent less unpleasant and 40 percent less intense, on average.
"That's pretty dramatic," says Fadel Zeidan, Ph.D., the lead author of the study and a postdoctoral researcher at the Wake Forest University School of Medicine, in Winston-Salem, North Carolina. The reduction in pain ratings was substantially greater than those seen in similar studies involving placebo pills, hypnosis, and even morphine and other painkilling drugs, he adds."

"Sometimes when you innovate, you make mistakes. It is best
to admit them quickly, and get on with improving your other
innovations." -Steve Jobs

 

HOME IS WHERE THE HEALTH IS
Meaning:  don't work too many long hours--it might not be good for you:

"While you may consider yourself lucky to be working long hours -- or working at all -- in the current economy, your diligence may be undermining your health in the long run.
People who work an average of 11 or more hours per day have a 67 percent higher risk of suffering a heart attack or dying from heart disease than people who work a standard seven- to eight-hour day, according to a new study in the Annals of Internal Medicine. Those who work between 10 and 11 hours per day have a 45 percent higher risk.
Work schedules may be an overlooked and underutilized early warning sign for heart disease, the researchers say.
Health.com: Surprising heart attack risks
If doctors simply asked their patients "How many hours do you work?" during office visits, an additional 5 percent of the people who have heart attacks each year might be identified beforehand as being at risk, says the lead researcher, Mika Kivimäki, Ph.D., a professor of epidemiology and public health at University College London.
Routinely burning the candle at both ends may not increase heart risk by itself, but it may be an indicator of an unhealthy lifestyle in general, according to experts who weren't involved in the research. The study didn't show a cause-and-effect relationship between long hours and heart attacks, they point out, and the apparent link could be due to a number of complicated health factors, including stress, lack of exercise, and eating high-calorie takeout rather than healthy home-cooked meals."

AN INSPIRING STORY
Meanwhile, in the UK, a boy has half a heart--and lives:
"A U.K. boy born with half a heart has defied the odds by living seven years longer than doctors thought he would, The Daily Mail reported.
Sammy Hori was expected to die within a few days of his birth, but now he enjoys playing football, despite only having one heart ventricle.
His parents, Eileen and Ken, who live in Cambridge, England, knew of Sammy’s condition even before he was born. Sammy has had three open heart surgeries.
“It is incredible watching him playing football with his friends as we never expected him to live for more than a week,” said Eileen, 41.
When Sammy was born in 2004, he weighed 6 pounds, 13 ounces, and he was diagnosed with a double outlet right ventricle heart, meaning he had one pump instead of two.
Eileen said Sammy will always live with half a heart, but he can still have a normal life. If his ventricles in the right half should ever fail, then a heart transplant would be his next option, she added."


"When you discover your mission, you will feel its demand.
It will fill you with enthusiasm and a burning desire to get
to work on it." -W. Clement Stone

HAPPY MOMS/HAPPY KIDS?
I thought this was interesting, though I bet many of you won't be surprised by it:

"Kids these days are happier when Mom's content in her relationship with her partner, but their bliss is less dependent on Dad's relationship satisfaction, a new study based in the United Kingdom suggests.

The findings, announced Saturday (April 2), are based on a sample of 6,441 women, 5,384 men and 1,268 children ages 10 to 15.

Overall, 60 percent of young people reported being "completely satisfied" with their family situation, while that number dropped to 55 percent in families with a mother who was unhappy in her relationship. And for kids of moms who were happy in their relationships, the "completely satisfied" group rose to 73 percent.

The ingredients for the most chipper children included: living with two parents (either biological or stepparents); having no younger siblings; not quarrelling with their parents regularly; eating at least three evening meals per week with their family; and having a mother who is happy in her relationship with her husband or cohabiting partner."

Be happy, Moebius moms and dads...

"The soul which has no fixed purpose in life is lost; to be
everywhere, is to be nowhere." -Michel Eyquem De Montaigne

MOEBIUS SYNDROME IN THE NEWS
Today our story comes from New Zealand, where we get to read about the young man with Moebius David Hartley and his mother.  David's about to get a very nice surprise--a new puppy:
"Hamilton solo mum Leigha Hartley does not sleep – she dozes.
"I have to be able to hear the sounds David makes so I know when to clear his airway," Ms Hartley said.
David is Ms Hartley's five-year-old son and one of just six New Zealanders known to have moebius syndrome, a rare neurological disorder affecting cranial nerves that control muscles in the face and neck.
In David's case he cannot smile, frown or speak. He has difficulty eating and is visually impaired, though his mother is thankful he can move around on his own, including walking with the help of a walker.
"I do find myself being thankful that he is mobile and can do some things for himself, but he has to be watched by adults all the time so he has very little independence," she said.
Adult supervision is required to keep David's airway cleared using a special suction machine. Ms Hartley has no option but to sleep near her son to keep watch. "I have to clear his airway 20 times a day minimum – and even more often when he is sick."
The active youngster has endured close to 30 surgeries but, according to his mum, takes everything in his stride.
"He might not be able to show it but he is a really happy boy and incredibly loving and helpful," Ms Hartley said.
The pair are now preparing their Rototuna home for a new arrival, a whoodledor puppy which will be trained by Assistance Dogs New Zealand to recognise when David has difficulty and needs assistance.
"More importantly, it will give David a best friend with the added bonus of keeping him safe as well," Ms Hartley said.
Families are asked to meet the dog training costs of $10,000, so Ms Hartley has opened an online fundraising account to help raise money.
"I'm trying to raise $15,000 with any money raised over $10,000 going straight to Assistance Dogs New Zealand to help with ongoing work – they do such an amazing job and make a massive difference in so many families lives."
Mother and son have created their own form of communication. Although David is able to understand everything his mum says, he replies with hand gestures and movements that the pair have developed over time.
"The only thing missing is having a companion that David can call his own so he doesn't have an adult watching over him all the time – I'm hoping the puppy will give him that new lease on life," Ms Hartley said.
Anyone wishing to contribute to the Hartleys' dog training fund can go online to fundraiseonline.co.nz/leighaanddavidhartley"

What an amazing story.  Here's to our new friends Leigha and David...

"Singleness of purpose is one of the chief essentials for success
in life, no matter what may be one's aim." -John D. Rockefeller