MOEBIUS HEROES WEEK CONTINUES AGAIN

Today we focus on 2 outstanding Moebius families.  First, check out this video about Moebius mom Sarah Bruner and all she's done--you can find the link here.
The video reminds us that, yes, raising awareness about Moebius Syndrome is of course about the children and adults who have it, and all that they do; but don't forget too, it is also the parents who can be the unsung heroes about whom we sometimes forget.

And then also, please met Moebius hero Zayne Herron.  Zayne is attending middle school now.  Her mother worried about what would happen to her there.  But on MSAD, her school really turned out to support her. 
I especially liked this from the article--see what one of Zayne's 11 year old classmates said about all this:

"Eleven-year-old Laynee Shirkey wore purple jeans because she wants other kids her age to understand that just because someone may look different doesn't mean "they are really any different than anyone," she said.

Shirkey knows that sometimes people with Moebious Syndrome get teased.

"I would just say to them, 'What if that was you'," she said."



Now that's raising awareness.

Read more about it:

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Woodward, Okla. — When 13-year-old Zayne Herron was born, her mother Emilee, knew something was wrong.

"She was born with a cleft palate and her jaw was set back and she just had a lot of feeding problems and other problems," Emilee Neagle said.

But otherwise, the pretty, young girl who was so easy to get along with was just as bright and normal as any child her age.

It would be a whole six years,  her mother said, before there was even a name for what had caused so many surgeries and continued to make it nearly impossible for her daughter to smile or register emotion.

Moebious Syndrome is a rare disorder, Neagle said. The syndrome causes paralysis of the facial muscles that control facial expression.

Friday was National Moebious Syndrome Awareness Day and in Woodward Middle School, students there couldn't be more aware.

At t certain times, the school ground looked like a Barney convention, as children, teachers and staff all donned the signature purple t-shirts, inscribed "I Smile For Zayne".

"Wow, this has just been a really emotional day," Neagle said. "I just had no idea people would support here this way."

Neagle said she began the day by running to the t-shirt shop to get two or three shirts because she wanted some people to be wearing the purple shirts on the day the syndrome was recognized.

"I just had no idea that the staff here (at Horace Mann where Neagle teaches) and so many students at school with Zayne would be wearing the shirts today," she said.

Eleven-year-old Laynee Shirkey wore purple jeans because she wants other kids her age to understand that just because someone may look different doesn't mean "they are really any different than anyone," she said.

Shirkey knows that sometimes people with Moebious Syndrome get teased.

"I would just say to them, 'What if that was you'," she said.

As classes let out on Friday, a sea of purple spilled out of the doors and onto the school yard where some purple people got onto the bus, while other purple clad walkers made their purple way home.

Watching them from the sidelines was purple Woodward Middle School Assistant Principal. Sarah Hall.

"I wore it because it is a chance to support Zayne and really also as a way of educating people about Moebious Syndrome," Hall said.

Moebious Syndrome is a condition that is present at birth, according to Neagle.

It is thought to possibly be caused, she said, by a lack of oxygen to the brain while the nerves of the face are being formed.

The condition results in a lack of facial expression, inability to smile, grimace or blink their eyes. Some cannot move their eyes laterally.

Some children have difficulty sucking and swallowing, causing feeding difficulties, especially when they are infants, Neagle said.

"It's just so rare," she said. "Like one in a million children have this."

It wasn't until a chance meeting with a family she knew whose son, Kash McFall of Leedey, was diagnosed with Moebious syndrome, that Neagle began to finally know there was a name for what her daughter had.

"They gave us this pamphlet and when we looked at it, it fit exactly all of Zayne's symptoms," Neagle said.

Neagle said the idea of her daughter growing up and going onto middle school terrified her.

But she said Zayne was brave and always wanted to participate in events and in every way possible, be a normal child.

"I was worried about it the day I dropped her off at middle school because she wasn't going to be at school with me where I could watch out for her," Neagle said. "But you know, she is so brave and then, when she got there, there was this group of kids there and they have always taken care of and protected her and watched out for her since day one."

In all, Zayne Herron has had 19 surgeries to help correct  the problems associated with Moebious Syndrome.

Today, she lives a normal, active life and enjoys her friends who aren't afraid to stand out in a crowd for the benefit of their best friends. - See more at: http://www.woodwardnews.net/local/x1647918062/Students-teachers-join-I-Smile-for-Zayne#sthash.jkRtnESK.dpuf

When 13-year-old Zayne Herron was born, her mother Emilee, knew something was wrong.

"She was born with a cleft palate and her jaw was set back and she just had a lot of feeding problems and other problems," Emilee Neagle said.

But otherwise, the pretty, young girl who was so easy to get along with was just as bright and normal as any child her age.

It would be a whole six years,  her mother said, before there was even a name for what had caused so many surgeries and continued to make it nearly impossible for her daughter to smile or register emotion.

Moebious Syndrome is a rare disorder, Neagle said. The syndrome causes paralysis of the facial muscles that control facial expression.

Friday was National Moebious Syndrome Awareness Day and in Woodward Middle School, students there couldn't be more aware.

At t certain times, the school ground looked like a Barney convention, as children, teachers and staff all donned the signature purple t-shirts, inscribed "I Smile For Zayne".

"Wow, this has just been a really emotional day," Neagle said. "I just had no idea people would support here this way."

Neagle said she began the day by running to the t-shirt shop to get two or three shirts because she wanted some people to be wearing the purple shirts on the day the syndrome was recognized.

"I just had no idea that the staff here (at Horace Mann where Neagle teaches) and so many students at school with Zayne would be wearing the shirts today," she said.

Eleven-year-old Laynee Shirkey wore purple jeans because she wants other kids her age to understand that just because someone may look different doesn't mean "they are really any different than anyone," she said.

Shirkey knows that sometimes people with Moebious Syndrome get teased.

"I would just say to them, 'What if that was you'," she said.

As classes let out on Friday, a sea of purple spilled out of the doors and onto the school yard where some purple people got onto the bus, while other purple clad walkers made their purple way home.

Watching them from the sidelines was purple Woodward Middle School Assistant Principal. Sarah Hall.

"I wore it because it is a chance to support Zayne and really also as a way of educating people about Moebious Syndrome," Hall said.

Moebious Syndrome is a condition that is present at birth, according to Neagle.

It is thought to possibly be caused, she said, by a lack of oxygen to the brain while the nerves of the face are being formed.

The condition results in a lack of facial expression, inability to smile, grimace or blink their eyes. Some cannot move their eyes laterally.

Some children have difficulty sucking and swallowing, causing feeding difficulties, especially when they are infants, Neagle said.

"It's just so rare," she said. "Like one in a million children have this."

It wasn't until a chance meeting with a family she knew whose son, Kash McFall of Leedey, was diagnosed with Moebious syndrome, that Neagle began to finally know there was a name for what her daughter had.

"They gave us this pamphlet and when we looked at it, it fit exactly all of Zayne's symptoms," Neagle said.

Neagle said the idea of her daughter growing up and going onto middle school terrified her.

But she said Zayne was brave and always wanted to participate in events and in every way possible, be a normal child.

"I was worried about it the day I dropped her off at middle school because she wasn't going to be at school with me where I could watch out for her," Neagle said. "But you know, she is so brave and then, when she got there, there was this group of kids there and they have always taken care of and protected her and watched out for her since day one."

In all, Zayne Herron has had 19 surgeries to help correct  the problems associated with Moebious Syndrome.

Today, she lives a normal, active life and enjoys her friends who aren't afraid to stand out in a crowd for the benefit of their best friends.

Eleven-year-old Laynee Shirkey wore purple jeans because she wants other kids her age to understand that just because someone may look different doesn't mean "they are really any different than anyone," she said.

Shirkey knows that sometimes people with Moebious Syndrome get teased.

"I would just say to them, 'What if that was you'," she said. - See more at: http://www.woodwardnews.net/local/x1647918062/Students-teachers-join-I-Smile-for-Zayne#sthash.jkRtnESK.dpuf

Eleven-year-old Laynee Shirkey wore purple jeans because she wants other kids her age to understand that just because someone may look different doesn't mean "they are really any different than anyone," she said.

Shirkey knows that sometimes people with Moebious Syndrome get teased.

"I would just say to them, 'What if that was you'," she said. - See more at: http://www.woodwardnews.net/local/x1647918062/Students-teachers-join-I-Smile-for-Zayne#sthash.jkRtnESK.dpuf

MOEBIUS HEROES WEEK CONTINUES

Again, sharing all the wonderful stories published online and in newspapers across the country and across the world, thanks to Moebius Syndrome Awareness Day.  Today--read about heroic Moebius mom Jamie Arnett and her young Moebius hero, her son Frank.  They live in Oklahoma.  They've had many obstacles to overcome; Frank has had many health problems.  But here's what I take from this piece--what Frank's mom said about her son.  What was it?

"We love him for who he is!"
Amen!  Read more about it:

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Friday a select group of people wore purple for Moebius Syndrome Awareness Day, hoping to shed some light on an extremely rare disorder that only one out of every 2 million people have.

Sapulpa’s 4-year-old Francis “Frank” Arnett is one of five children in the state of Oklahoma to have the syndrome.

“We finally saw a geneticist in Oklahoma City, who diagnosed him with a variation of Moebius Syndrome. We finally had a name for what was ailing our son,” said his mother Jamie Arnett.

Mobius Syndrome is a congenital neurological disorder which is defined by facial paralysis and the inability to move the eyes laterally.


Every individual has different symptoms, but most are born with complete facial paralysis resulting in not being able to close their eyes or form facial expressions.

Other symptoms that can occur with Mobius syndrome are:

• Limb abnormalities including clubbed feet, missing fingers or toes for example.

• Chest-wall abnormalities (Poland Syndrome)

• Crossed eyes (strabismus)

• Difficulty in breathing and swallowing.

• Corneal erosion resulting from difficulty in blinking.

Researchers have also discovered if the syndrome effects certain cranial nerves the individual could suffer from hearing loss.

Other difficulties that occur from the Syndrome include not being able to eat because of not being able to chew, babes can not breastfeed due to lack of suction muscles, dental problems due to loss of enamel and muscle degeneration, and eye problems such as cornea erosion and sleep disorders because of limited blinking.

“He has to wear tinted glasses because the sunlight can damage his eyes, and his eyes tend to cross because of the nerve damage. He has had extensive dental surgery because he was born without enamel on most of his teeth, and the others were malformed,” said Arnett.

The only medical treatment is just to work around the extreme difficulties of an individual suffering from the rare disorder.

• Feeding tubes can be used for the lack of an ability to consume foods.

• Physical, occupational, and speech therapy can improve speaking and motor skills that have been effected by Moebius.

• Constant eye drops and tinted glasses can be used to help to counter dry eyes or other ocular damage symptoms.

• Surgery can be used in some cases to fix things like cross eyes, another growing popular surgery for Moebius has been dubbed “smile surgery.” The surgery grafts muscles to the corner of the mouths to give the individual the ability to smile, but as of now does not help them form any other expressions.

Arnett said when Frank was born they did not know anything was wrong except that he failed the initial hearing test. For the first 15 months Arnett noticed Frank did not smile much or have any facial expressions, along with no desire to play with toys or stick them in his mouth.

Frank’s parents took him to the early intervention office at the Creek County Health Department in Sapulpa.

“They confirmed my worst fears, that my little boy was severely delayed, probably deaf, and needed testing in all areas immediately,” said Arnett.

After two years of therapy, being fitted for hearing aids, g-tube surgery Frank was diagnosed with a variation of Moebius.

Arnett said “life became much easier at that point” because they were able to connect with people on Facebook and through support groups of mothers of kids with Moebius.

“That was probably the best thing we ever did because some kids with Moebius Syndrome simply do not sleep, and it was nice to talk to other mothers about what worked for their little ‘Moebian,’” said Arnett.

Frank has to take a combination of three medication just to sleep 6-8 hours. Arnett said before the medicine he would sleep only 45 minutes at a time, and could literally stay awake for 72 hours at a time.

Arnett said Frank is unable to eat solid food and still uses a feeding tube, he can not feed himself, dress himself, talk properly or play with “big kid” toys.

“ We love him for who he is! he loves to be held, and rocked, and he loves “Baby Einstein videos and he really loves his baby toys. His favorite place to go is Walmart, because he loves picking out his diapers! he likes to ‘talk’ to the baby on the package. He has also participated in the Special Olympics Young Athletes Program and brought home his very first gold medal!”said Arnett.

Arnett is currently fund raising to raise $2,000 to help send her family to the Moebius Syndrom Association Conference in Bethesda, Md.

Moebius was discovered in 1888 by neurologist Paul Julius Moebius.

For more information you can view Mobius Syndrome Foundation Facebook page. For further information on Frank and his family’s life with Moebius or to aqquire on how to donate or help Frank visit the Facebook page “For the Love of Francis Henry.”

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MORE MOEBIUS HEROES

Here are more stories that came out of Moebius Syndrome Awareness Day, stories of ordinary families and persons dealing with Moebius Syndrome; and being everyday heroes in the process.  I want to make sure that as many people as possible have a chance to see these.  Below for example is the story of Warren Armstrong, from the UK.  He is a year old, and he has Moebius.  He's thriving.  Read more about him:

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A one-year-old has been diagnosed with a rare disorder that makes him look permanently unhappy.
Warren Armstrong suffers from Moebius syndrome which makes it difficult for him to smile or pull facial expressions.
Warren’s mother, Jannine Atkinson, 26, from Salford, said: ‘The first year has been really difficult. It was really hard to recognise when he wanted something.
He finds it really hard to smile - it takes a lot to get one of out of him. He constantly looks grumpy because his chin is back, but we have learnt to be able to recognise when he’s happy or when he’s upset. You can see it in his eyes, a sort of glimmer. He’s really loud and talkative as well.’
Moebius syndrome is a rare neurological condition that is present from birth.

It affects the cranial nerves meaning patients are unable to move their faces.
Sometimes patients also have skeletal abnormalities affecting their hands and feet.

They often also have breathing problems, visual impairments, sleep disorders, weak upper body strength, and dental problems.

WHAT IS MOEBIUS SYNDROME?

Moebius syndrome is a rare neurological condition that is present from birth.
It affects the cranial nerves meaning patients are unable to move their faces.
Sometimes patients also have skeletal abnormalities affecting their hands and feet.
They often also have breathing problems, visual impairments, sleep disorders, weak upper bodies, and dental problems.
The syndrome is thought to be genetic but usually only occurs once in a family.
Source: Moebius Syndrome Foundation
 

The syndrome is thought to be genetic but usually only occurs once in a family.
Warren was also born with deformed hands and had to be fed through a tube in his first few weeks as he unable to latch onto his bottle.
Ms Atkinson said she knew something was not right, but it was not until Warren was four months old that doctors were able to diagnose the rare syndrome.
It is believed only about 20 children in the UK suffer the same symptoms as Warren, who lives with two of his four siblings, sister Leona, five, and brother Leyton, three.
He also has two sisters Annalise, five, and Ellouise, three, who live with his father, Keith Armstrong, 32.
Ms Atkinson has been told Warren will require an operation on his hands when he is two, and one on his face when he’s four.
She now wants to make more people aware of the condition.
She said: ‘I’m hoping he can go to mainstream school. However, people when they see him with his “sad look” as we call it, they need to understand it’s not his fault - it’s a disorder.
‘Hopefully, more research can be done into it to find out what causes it.’

Warren was diagnosed when he was just four months old - in his first few weeks he had to be fed through a tube as he could not latch onto a bottle

She now wants to make more people aware of the condition.
She said: ‘I’m hoping he can go to mainstream school. However, people when they see him with his “sad look” as we call it, they need to understand it’s not his fault - it’s a disorder.
‘Hopefully, more research can be done into it to find out what causes it.’

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MORE MOEBIUS HEROES

Moebius Syndrome Awareness Day is past, but I want to continue to draw attention to some of these terrific articles about persons with Moebius Syndrome, and their families that have been appearing for the past few days.  For example, here is a story about a young man named Harrison Lowry--all the way from Australia!  Note that as we so often see, doctors told Harrison's family that he may never be able to eat or speak.  They were proved wrong again.  Read on:

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THE challenges of starting kindergarten will be a piece of cake for Harrison Lowry.
The Kedron three-year-old, who suffers from Moebius Syndrome, has spent most of his life fighting to survive. He has had 12 operations and spent more than 20 weeks at the Mater.
In the past 12 months alone he has gained the ability to eat everything, drink and talk; and on Friday he will start at the C & K Wavell Heights Kindergarten.
Moebius Syndrome is an extremely rare congenital neurological disorder characterised by facial paralysis and an inability to move the eyes from side to side.
Other symptoms include respiratory problems, speech and swallowing disorders, visual impairment, sensory integration dysfunction, sleep disorders and weakness in the upper body.
Proud mum Therese Whybird said Harrison, now older brother to 14-month-old Ted, took everything in his stride.
Ms Whybird said Harrison, who now played doctor at home, had come along in leaps and bounds since having a submucous cleft repair in February last year.
"We were told he may never eat, drink or talk ... this was gut-wrenching," she said. "Thankfully we have a little fighter."
Within the first 24 hours of Harrison's life he was fitted with a nasopharyngeal tube to breathe and a nasal gastric tube to feed.
Ms Whybird said Harrison started to learn sign language at 12 months and by two had more than 200 signs.
"Harrison is an amazing, determined child ... we are so proud of our little man and the tough journey he has overcome," she said.
MOEBIUS SYNDROME
Harrison Lowry suffers with Moebius Syndrome, an extremely rare congenital neurological disorder characterised by facial paralysis and an inability to move the eyes from side to side. Other symptoms include respiratory problems, speech and visual impairment.

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MOEBIUS SYNDROME IN THE NEWS TODAY...

...and it should be, today of all days, as today is Moebius Syndrome Awareness Day.  We pick January 24th because that is the day that the doctor who helped discover and give a name to Moebius Syndrome, Paul Julius Moebius, was born.  And so many of us are out there raising awareness today.  Take a look for example at Moebius hero Lisa Bracamonte of southern California, and at all her doings:

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Brawley resident Lisa Bracamonte was born with a rare neurological disorder that causes facial paralysis.
Bracamonte has lived with Moebius syndrome for 39 years and, although it has affected her life, she does not let it bring her down.
“When I was growing up, it used to be really hard for me,” she said. “People would always stare at me.”
Now that Bracamonte is older, she has learned that appearances don’t make up who a person is.
“My friend would always tell me, ‘Lisa, it doesn’t matter how you look, people will accept you the way you are.’”
Today is Moebius Syndrome Awareness Day, a day dedicated to bringing awareness of the condition and educating people about it. Moebius syndrome is defined as partial or complete paralysis of the sixth and seventh cranial nerves, often resulting in the inability to show facial expression such as smiling and even blinking, according to a Moebius Syndrome Foundation brochure.
Additional conditions could include respiratory problems, speech and swallowing difficulties, dental problems, club feet, visual or hearing impairments and more, the brochure stated. Not all symptoms are present in every person who has Moebius syndrome.
For example, Bracamonte said she occasionally has difficulty swallowing her food and has even started choking while eating.
“People have way worse cases than me,” she said. Having seen advanced progression of Moebius syndrome at conferences throughout the country, she described herself as “having a touch of Moebius syndrome.”
The cause remains unknown, and because the condition is so rare, it is difficult to diagnose. Some people are undiagnosed for quite some time.
The conferences, which take place every two years, allow Bracamonte to learn more and more about the disorder and her own limitations. Through a surgical specialist and therapist, she said she learned that she has a muscle on the right side of her face, but it is paralyzed.
It’s possible for people with Moebius syndrome to have a paralyzed muscle or no muscle at all in their faces. With daily therapy exercises, Bracamonte is hopeful she can one day use that muscle to smile.
Exercises to strengthen that muscle include drinking out of a straw at the midline of her mouth and chewing gum or taffy on her paralyzed side.
“I feel the muscle move when I chew taffy,” she said. “I feel very happy (when it moves) because I know that it’s working.”
Treatment for the condition varies depending on the symptoms. Sometimes surgery can help, other times all that can be done are physical and speech therapies.
There are daily challenges Bracamonte faces because of Moebius syndrome. When she sleeps, she cannot fully close her eyes so they end up really dry, especially in the mornings. Running quickly can also be problematic because of those paralyzed muscles.
Despite the struggles, Bracamonte said, “Nothing stops me.”
She has completed her associate’s degree at Imperial Valley College, is working at a day care center as part of Imperial County’s Office of Education’s Early Head Start program and her ultimate goal is to be the director of a day care center.
“I love working with children,” she said. “They make you laugh, they make you smile and they brighten your day.”
Aside from her work, Bracamonte is very involved at St. Margaret Mary Catholic Church in Brawley and other organizations.
“I’ve been through obstacles because I have this, but I don’t give up because I have a lot of faith in God,” she said.
To other people who have Moebius syndrome, her advice is to never give up.
“I believe no one should give up. Always give it your best shot,” she said.

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Amen, Lisa.  Good for you!

LOOKING FOR A JOB?

Do you have Moebius Syndrome?  Are you unemployed and looking for that first job?  Or are you looking for a new job?  The job market can be a tough one these days.  But there are a few things you can do for yourself that might increase your chances.  Below are some ideas. 

Note that, below, it mentions that your appearance is important.  Remember--that does NOT mean that, because you have Moebius and look a bit "different", that therefore you have no shot at a job.  Yes, your face is a bit different than most.  That's why I believe it's a good idea to, in an interview with a prospective employer, to bring Moebius Syndrome up yourself, explain it, and thus let your employer know that though you might look different, you're still the most awesome candidate out there.  Meanwhile, in all other ways, make sure you dress nice and look nice!  That's important.  Here's the piece I was talking about:

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If you’re unemployed, there’s good news and bad news about the labor market. The good news is that small business owners are hiring, the bad news is they say they can’t find qualified candidates.
According to a report [http://www.nfib.com/Portals/0/pdf/sbet/sbet201401.pdf] released earlier this month by the National Federation of Independent Businesses, small business owners are struggling to fill open positions due to a lack of appropriate candidates. Their claim is that "this is not just a “skills” issue, but one of poor attitudes, work habits, timeliness, appearance and expectations.”
This means that sometimes it’s the job candidates themselves getting in their own way of landing a job. Before you get discouraged that employers’ expectations are too high, there are steps you can take to improve your soft skills and make yourself a more appealing candidate.
1. Prove Your Worth. The current economic conditions give employers the upper hand when it comes to hiring. It's about supply and demand. Their demand is obviously not great enough to settle for undesirable supply, particularly if you are showing up to interviews unprepared. If you want a job, figure out what employers want and then adjust your resume and interview responses to show your worth.
2. Look in the mirror. It’s all about first impressions so if your hair is messy or your clothes and shoes are worn out, it’s time to fix that now. With a plethora of discount shopping options available looking sharp has become more affordable. Even if the office workplace doesn’t require formal business attire, you still need to look professional during an interview. As an employee, you represent your employer, both internally and externally. No one wants to hire or work with a slob. So don’t be one.
3. Always be on time. If you're constantly late (even if only a few minutes) remember this rule of thumb I once heard a manager say: "Being early is being on time, being on time is being late, and being late is unacceptable."  If you are chronically late, wear a watch and set it ahead so you end up where you need to be at the right time. Or start telling yourself that you need to be places much earlier than you need to be. Figure it out because no one wants to deal with your tardiness and employers will bury your resume if you are late for an interview. Lateness is seen as a sign of disrespect for others’ time.
4. Change your attitude. If you have an attitude that employers are always trying to take advantage of you by working you hard and paying you little, it’s no wonder you are unemployed. So often employers find themselves surrounded by employees who won’t do more than the bare minimum of what’s expected. This is going to get you nowhere fast. Change your attitude and when you speak with employers, make sure you convey your willingness to go above and beyond the call of duty. Show them that you care about making their businesses better and then hold true to that when you get hired. A good attitude will get you far. A bad attitude will get you a pink slip and shown the door.
5. Lower your expectations. If you’ve been unemployed for some time, make a short-term and a long-term professional plan for yourself. Part of your short-term plan might mean lowering your compensation expectations for what you are willing to accept to get back into the labor market. There is nothing wrong with taking a pay cut to meet your longer-term goals; use the opportunity to prove yourself. Even if your employer doesn’t reward you for your hard work, you can use that experience to secure a new opportunity. It’s better to work than to not, so keep that in mind before you pass up a job offer.

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MOEBIUS SYNDROME REMAINS IN THE NEWS!

Because, with Moebius Syndrome Awareness Day coming up, so many of us are doing great things to get our stories out there and to tell others what we're all about.  Many of you may have already seen the story below, but I wanted to make sure that even more people see it.  The below is a story about my friend Kelsey Ferrill, a young lady from Canada now attending college who has Moebius.  I especially liked this particular quote from Kelsey:  “You can’t change it, so you go along and do the best that you can.”

This story ran in her univesity's student newspaper.  Read more about it:

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

Twenty-three-year-old Kelsey Ferrill is on a mission to help people understand the rare, incurable neurological condition she has lived with all her life.
The first-year journalism student is hoping to educate people about why she looks and sounds the way she does by hosting a booth in the Stan Grad Atrium on Jan. 24, the global Moebius Syndrome Awareness Day (MSAD).
“I want to raise awareness so people are more understanding,” said Ferrill, who believes that the more people know, the less they stare and question her about her condition.
Moebius Syndrome has a multitude of physical symptoms, but is most often characterized by facial paralysis and the inability to blink or move one’s eyes from side to side. These symptoms are caused by a malformation or damage of the cranial nerves, which control functions such as facial movement.
Ferrill—who was born with these symptoms and was diagnosed at six months old —also has speech problems because of the paralysis that affects half of her tongue.
This symptom causes some people to have a hard time understanding her, and “it definitely does make communication difficult sometimes,” she said.
Ferrill has had at least 20 surgeries to correct some of these symptoms. As a result, she can now blink, “but it doesn’t happen a lot.”
She’s also had surgeries to move functioning muscle from other areas of her body to her face to create the ability to smile. However, according to Ferrill, “it’s not a ‘typical’ smile,” since she can only move the corners of her lips upward and can’t show her teeth.
Despite her condition, Ferrill keeps a positive life attitude.
“You can’t change it, so you go along and do the best that you can.”
Ferrill’s MSAD booth will be open from 11 a.m. to 1 p.m. on Jan. 24, and the booth will feature Moebius Syndrome information pamphlets, an educational slide show, and draws for prizes, including a draw for free concert tickets.
On Jan. 24, Ferrill is encouraging people to wear purple, the official colour of the Moebius Syndrome Foundation.
The awareness day is being made possible through the assistance of SAIT’s Student Association (SAITSA), which is helping Ferrill organize her booth and is donating the door prizes.
“SAITSA is proud to be supporting a student who is so passionate about raising awareness about her situation, and [of] the larger idea of having a supportive and judgment-free campus,” said Amanda Hanna, SAITSA vice-president of student life.

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MOEBIUS SYNDROME IN THE NEWS

With Moebius Syndrome Awareness Day coming up, there are lots of new pieces coming out, and to everyone who is working hard to raise awareness, and to get your story or your family member's story in the news, we all say--great job!  There are many stories to choose from.  I thought that just maybe many of you had not seen this one yet--it's about the Barron family, in Wisconsin, and their wonderful son, Wilhelm.  Read all about it:

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Eye drops, eye drops, eye drops.
Throughout every single day Danielle Barron of Oshkosh puts them in her son Wilhelm’s eyes, and every night she puts ointment on them.
The eye drops are everywhere — in her purse, in the car, in the living room, bedroom and even in her coat pocket. The Barrons don’t go anywhere without eye drops for 4-year-old Wilhelm, donned Willie for short.
Willie was born with Moebius Syndrome, a rare disease that affects an estimated 2 to 20 babies per million, according to the Many Faces of Moebius Syndrome website. Fewer than 10 people in Wisconsin have it.
When Willie was born, the left half of his face was normal and the right side paralyzed. He has half a smile on the left, though if he’s really laughing the right corner of his mouth and eyebrow twitch.
He has 10 teeth, and cannot blink, squint or move his eyes to the left or right. He also was born with strabismus, or crossed eyes, and with clubbed feet, but has had surgeries to correct those conditions.
Willie was later diagnosed with Poland Syndrome, which oftentimes goes hand-in-hand with Moebius. He’s missing pectoral muscles and has deformed ribs, which causes an indentation in his chest.
Moebius Syndrome brings constant challenges, but the family’s optimism, reluctance to be held back and love for Willie keeps them looking forward to each new day.

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And the above is only part of the story.
Go to the story link above and read the whole thing.  You'll be glad you did...

FRIDAY FOOTBALL PICKS!

This time--NFL conference championship game weekend.  I went 3-1 last week; I'm 6-2 so far for the playoffs.  Here we go:

San Francisco at SEATTLE.  My pick:  49ERS.  Yes, Seattle is at home with its loud "12th man" behind them, and they have a great defense.  But think of this:  this particular Seahawks team has never been here before, to a championship game.  Seahawks QB Russell Wilson has not played as well recently as he has; his passing accuracy has been off.  Meanwhile the Niners have been peaking it appears; and think of this--who has the better receiving corps, able to make a big game-changing play, which could easily turn a game like this?  Clearly it is San Fran, with Vernon Davis, Michael Crabtree, etc.  This should be a tough, tough game, very close...but I think the 49ers will find a way in the end.

New England at DENVER.  My pick:  BRONCOS.  Seems like the Patriots have been getting all the ink and all the love this week in the media.  And its true; their new-found running game on display last week was impressive.  This isn't a team that has to live on Tom Brady's arm anymore.  And yes, the Broncos have some tough injuries on defense.  And yes, Brady has had the edge over Peyton Manning over the years in playoff games.  But remember--this game is in Denver, and that's a big home field advantage for the Broncos.  They've had a week to gear up for the Pats' run game.  Peyton Manning has a pretty good offense of his own that he can play with, and New England is banged up on defense, very much so.  The biggest thing about this game is:  enjoy it.  These are two Hall of Fame quarterbacks, approaching the end of their careers probably, but both still playing on a high level.  Who knows how many more times they'll face each other in a game of this magnitude?  But here they are.  I think the Broncos will pull this one out in a close game.

FOR MOEBIUS MOMS AND DADS: ON FATHERHOOD

I just thought this was interesting--a Washington Post writer below muses about what makes a good dad.  Important for all of us who are or will be parents, and of course important for all of you out there parenting a Moebius child, too.  Some good points below--pretty universal, applicable to a whole lot of parenting situations.  See if you agree:

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For some reason I’m been thinking this week about fatherhood, and the role of the Dad — not so much the joys of the job, which are many and obvious, but the requirements, the ideal qualities, as viewed from the progeny. What makes a good Dad? I don’t have the answer, but I bet some of you folks out there have some ideas.
First, let’s be honest and admit that, as a rule, mothers are better at motherhood than fathers are at fatherhood. You don’t hear about deadbeat Moms and distant mothers. You don’t hear about Dad and Apple Pie.
Or maybe I’m conflating closeness, the power of the bond, with good parenting. Discuss. What’s certain is that fatherhood always carries with it the possibility of uninvolvement, of abandonment, or disinterest. Hard as it is to imagine for those of us lucky enough to be close to our kids, some fathers don’t bond so well, and either take off for the hills or just hole up in their mancave and pay little attention. This is not something for which I have felt the need to conduct personal research.
The converse can also happen: The distant father re-appearing, or discovering for the first time that the child is interesting, and fun, and smart, and someone with whom you could actually carry on a conversation. The father-child relationship can evolve. You can work on it. There’s hope. This, too, is something I did not need to learn about from a textbook.
Fatherhood also evolves generationally, among a broad cohort of men who discover new pleasures in care-giving that their own fathers didn’t enjoy. Back in the day, a man was  forgiven if he viewed a baby as borderline radioactive. Now we live in a society where there are diaper-changing tables in every men’s room at every airport (of course, the guys stand around pointing at the thing laughing uproariously). I’d like to think that Dads are doing a better job these days, in general. (Another discussion point.)
So what is that job? I think it’s more than being available, or cheering at soccer games, or taking a kid to visit colleges. A Dad is supposed to be there for the heavy lift. He is the first to arrive and the last to go in crunch time. His support has no waver in it; there is no ambiguity about his feelings. He believes in the child, to the point that he will let go, and trust the child to make a good decision. He is not over-protective or meddling. He’s rational about likely risks and calms unnecessary fears. He somehow makes the world less scary.
A good father is somehow just THERE, always, a reassuring presence — even when he’s not there anymore, because of the rules of mortality, and all you can do is hear his voice in your head.

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SOMETHING-INTERESTING-AND-ALSO-WITH-A-CONNECTION-TO-MOEBIUS DEPT

Hmmm.  Something interesting and with a connection to Moebius.  So what is it?  Well--first of all, this morning I read an interesting column from famous national columnist Maureen Dowd in the NY Times.  So first of all let's read what she had to say--and then afterwards I'll muse a bit on it.  First, here's a piece of what Maureen Dowd had to say today:

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Far be it from me to defend what Jon Stewart has demolished.

But I would like to speak up on behalf of the fledgling New York mayor’s de Blasphemy, now universally deemed his first mistake and possibly grounds for impeachment: daintily carving up his smoked-mozzarella-and-sausage pizza at Goodfellas in Staten Island with a knife and fork.

I’m not saying it’s right. I know it’s wrong. I’m just saying I do it, too. I eat pizza with a knife and fork because I want only the gooey stuff on top, not the crust.

(When I first started in The Times’s Washington bureau, I soothed my nerves by noshing on pizzas slathered with mashed potatoes, a dish that required a spoon and bigger jeans.)

I almost didn’t become a Times columnist because of a de Blasio-like faux pas. When Arthur Sulzberger Jr. took me to breakfast to discuss the possibility of a column, we were talking when he suddenly looked dismayed. I thought it was my ZERO knowledge about NATO, but it wasn’t.

“Why,” he asked me, “are you eating your muffin with a knife and fork?”

I thought I was being ladylike, which might have been de Blasio’s problem as well. The photos looked way too ladylike for the 6-foot-5 mayor. It seemed more like the prissy move of Warren Wilhelm Jr. of Cambridge — his original name which he changed because of his estrangement from his alcoholic father — than the paesano Bill de Blasio of Brooklyn.

Fearing my future depended on it, I immediately clutched the muffin. But switching to your hands midway, as the mayor also did, simply makes you seem feckless as well as forkless; better to stick to your guns, and tines.

David Letterman’s Top Ten “Odd Habits of Mayor Bill de Blasio” on Monday featured this one: “Refers to himself as ‘Her Majesty.’ ”

Indeed, when F.D.R. served King George VI and his wife, Queen Elizabeth, their first hot dogs on a 1939 visit to America, the confused queen ate hers with a knife and fork, afraid to heed the president’s advice to pick it up and relish it.

Pizza can be hazardous to an administration. We all remember what happened when a Clinton intern delivered a pie to the Oval Office during a government shutdown.

But de Blasio’s offense was so trivial that the most irritating part was the labor-loving mayor’s labored explanation, grandly attributing it to “my ancestral homeland.”

“I have been in Italy a lot, and I picked up the habit for certain types of pizza,” he told reporters. “So when you have a pizza like this, it had a lot on it, I often start with a knife and fork but then I cross over to the American approach and pick it up when I go farther into the pizza. It’s a very complicated approach, but I like it.”

He sounded like a parody of the self-serious New York liberal, convinced he’s right about everything from the Sandinistas to stop-and-frisk to a slice in Staten Island.

De Blasio sounded alarmingly like Zosia Mamet’s mega-rambling character, fellow Brooklynite Shoshanna Shapiro, on a recent “Girls,” when she quizzes a quizzical Adam about his favorite utensil.

When he says, “I guess a fork,” she lectures: “O.K., that is crazy. Like, why would you want a cold metal prong stabbing you in the tongue when instead you could have food delivered into your mouth on, like, a cool, soft, pillowy cloud?”

The new mayor should have just laughed it off. Then he might not have ended up getting reduced to rubble by Jon Stewart, who asked “the champion of the middle class”: “Were you elected the mayor of Italy? No! Look out the window of the pizzeria. ... Do you see a Sistine Chapel or a Leaning Tower of Pisa? No, you don’t! You see several junkyards and a tanning salon.”

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Okay.  Well, so, you say, yes, that's interesting and kind of humorous...but where's the connection to Moebius?  Obviously Ms. Dowd is trying to be a bit funny, and to tie several things together and kind of observe the culture here...and to suggest too that, hey, there's nothing wrong with eating certain things with a knife and fork, why can't people make that choice for themselves?  Right.  Got it.  But where's the Moebius tie-in?

But I think it's here.  And what I'd tell Maureen Dowd is this--yes, interesting column.  And sure, I see nothing wrong with eating usually-hand-held foods with a knife and fork.  Know why?  Because for some of us with physical differences--for example, for some of us with Moebius--it's kinda necessary!

Don't others of you with Moebius feel this way?  And sometimes have to do this?  I mean, for us it's hard to completely close our mouths.  We kind of have to chew with our mouths open.  Thus for certain messy foods--say, for example, a blueberry muffin--it can be better to eat it with a knife and fork.  That way we don't spill!  (at least, that's the case for me).

So to me, not only is it an okay lifestyle choice to eat hand-held foods with a knife and fork...not only is it silly in my view to be "dismayed"  (as Ms. Dowd's boss once was) when somebody uses a knife and fork with a food that you usually wouldn't use on it...remember, folks:  some of us with physical differences HAVE to eat certain things with utensils.  It helps us eat cleaner and better.  Diversity is not just about race, class, gender, or ethnicity.  It's about so much more. 

DON'T SWEAT THE SMALL STUFF

Good advice for absolutely anybody--but especially good if you're, say, a parent of a Moebius child (we all know how hectic your lives can be at times) or if you're a person with Moebius Syndrome (we all know the pressures and anxieties that everyday living can bring).  Read on:

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There are two types of people in this world: those who swoop up their accidentally dropped keys with no complaints and go along their merry way and those who, more often than not, can't pick them up without cursing or letting out a big, miserable sigh.

An insignificant occurrence, yes, but it's often the mundane incidents (a whining child, an on-the-fritz printer) that reveal how vastly different human temperaments can be, says Michael D. Robinson, Ph.D., a professor of psychology at North Dakota State University.

Some people take life's small slights and setbacks with a shrug, while others freak out, blow up, or fly off the proverbial handle in a loud huff or with silent seething. Why such a yawning gap in behavior? This is a question that scientists have only recently recognized as being significant to health.

Just as life's most challenging experiences can flood the bloodstream with stress hormones, the smallest hassles can take a toll as well, says Nancy Nicolson, Ph.D., an associate professor of psychiatry and psychology at Maastricht University in the Netherlands.

"The changes are small -- a 10 to 15% increase in cortisol levels in response to typical daily annoyances, as opposed to a 100 percent or more increase during very stressful events," like a college entrance exam. But these small fluctuations "happen more frequently and can have a cumulative effect," says Nicolson.

Feeling chronically stressed increases the risk of heart disease and weakens the immune system. It can also compromise some types of memory and learning, says Carmen Sandi, Ph.D., the director of the Brain Mind Institute at the École Polytechnique Fédérale de Lausanne in Switzerland. If we could all be more even-keeled (so we didn't sweat the small stuff), we would enhance our physical and mental health.

Recent research suggests that we can train ourselves to not sweat the small stuff. To be a more even-keeled person, first you need to think like one, says Rosalind S. Dorlen, Psy.D., a clinical psychologist in New Jersey. That means using mental strategies that exercise the region of the brain that's responsible for reasoning, so that it isn't overwhelmed by the part of the brain that's involved in emoting. To do that takes practice. Consider every irritating incident as a chance to work out the reasoning area in your brain and you'll realize that what constitutes a stressor is subjective and that little set-backs will ruin your day only if you let them.

Real Simple presented a few everyday nuisances to experts in the field of emotional regulation and asked, "What would an even-keeled person do?" Here are their answers.

You feel: Inconvenienced

The situation: You put off your errands. You canceled your lunch date. All so you could be home for the cable guy between 9 a.m. and 1 p.m. He never shows up.

How to stay calm: Reframe the circumstances. "Thinking differently calms down your brain's emotional region," says James Gross, Ph.D., a professor of psychology at Stanford University. For instance, if you spent your morning lingering over coffee and the paper while waiting, try to view this as a rare, unexpected luxury instead of a waste of time.

It's also helpful to think of the big picture. As Dorlen puts it: "What's going on and how you end up feeling depend on where you point the lens." Perhaps the cable guy simply had more assignments than he could humanly keep up with. This is not to say that you should let it go. You absolutely should call the cable company and express your frustration. But by readjusting your perspective, you can voice your displeasure in a less angry way and still get results.

You feel: Defeated

The situation: You've prepared for a presentation for weeks, but you end up blanking on key points. Back at your desk, you're about to break down in tears as you replay the episode in your head over and over again.

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How to stay calm: Focus on the present. After all, "it's never the stress-inducing event that you're freaking out about," says Steven Berglas, Ph.D., a life coach in Los Angeles. "It's what you're afraid might happen because of it," whether that's being reprimanded by your boss or laughed at by your colleagues.

But that's not real at the moment; what's real is that you can take control of the situation. Quell the angst with an impromptu meditation session. Rick Hanson, Ph.D., a clinical psychologist in San Francisco and the author of Hardwiring Happiness, suggests quietly taking a moment to breathe in and two slow moments to breathe out. "Inhaling speeds up the heart rate," he says, "and exhaling slows it down."

At the same time, say to yourself what you feel (I am upset), then let that label disappear from view. "Naming your emotions as you're feeling them reduces the activation of your emotional brain and engages your reasoning brain," says Hanson. Now you can focus on fixing the problem, which could be as simple as sending out a recap memo on your presentation that includes a summary and the points that you missed.

You feel: Anxious

The situation: Your husband is running late (though he swore he would be on time). Now you're going to be late for your appointment, and your toddler just wiped his nose on your skirt.

How to stay calm: Problem-solve. If even-keeled people rarely appear stressed, it's because they're too busy looking for answers. A tardy spouse and a soiled skirt aren't catastrophes to be cursed at but circumstances to be fixed. Dorlen suggests asking yourself, immediately after the offending incident happens, How am I going to solve this?

"Once you phrase the question in your mind, you have awakened the reasoning portion of your brain and put yourself in a position to find an answer," says Dorlen, the clinical psychologist. "You're no longer the victim of your emotions." Next, pretend that you're a coach with a game plan, such as pulling on a clean skirt, taking your child with you, and texting your husband to meet you at your appointment. Now take action.

You feel: Disrespected

The situation: Somehow, your offer to bring back coffee for an office mate has turned into an order for six complicated lattes. As you rattle off the list to the barista, you notice that she is rolling her eyes.

How to stay calm: Speak positively. To understand why this is important, it helps to know a little brain anatomy. The brain is made up of cognitive and emotional parts, and the emotional part is composed of various circuits, says Andrew Newberg, M.D., director of research in integrative medicine at Thomas Jefferson University Hospital, in Philadelphia.

These circuits include the reward system, which reinforces positive experiences, and the sympathetic nervous system, which connects the brain to the body and issues a fight-or-flight response when you feel stressed. Positive words (which we grew up associating with something pleasant, such as caring teachers) activate the reward system. Negative words (which we associate with something unpleasant, like playground bullies) spike angry or sad thoughts.

So, if you're not willing to let it go, say, with a good-natured laugh, "I know this long order is annoying. I wish I had a shorter list, too," as opposed to "Hey, you're rude!" The words will calm you, and they will also put the other person in a more generous frame of mind. "Our emotional states reflect those around us," says Newberg. If you speak pleasant words in a calm tone, chances are, the other person will reply with pleasant words in a calm tone. Starting the exchange in a peaceful way increases the chance that you'll be sipping on your espresso sooner rather than later.

You feel: Disappointed

The situation: You've been planning this cocktail party for weeks. Now that the big day is here, it's snowing. Heavily.

How to stay calm: Embrace optimism. "Behind every setback, there's an expectation that things should be different," says Dorlen.

Even-keeled people are no different, but when things don't go as planned, they feel hopeful that circumstances will get better. Which in this case may mean thinking, "with fewer people, our gathering will be much more intimate and relaxed. And who doesn't love that on a cold winter's night?"

"Optimism buffers the effects of stress—not only for everyday hassles but also for life-altering challenges," says Madelon Peters, Ph.D., a professor of experimental health psychology at Maastricht University. Optimism is also associated with resilience. That's why optimists are better able to bounce back after difficult times.

While it's tough for natural-born pessimists to don rose-colored glasses instantly, they can condition their brains so that it gets easier to do so over time. In a 2011 study published in the Journal of Behavior Therapy and Experimental Psychiatry, women who participated for two weeks in an imagery and writing exercise in which they imagined an optimal future reported a sustained increase in optimism compared with those who wrote about random topics.

To try this technique, imagine yourself 10 years from now under the best possible, yet still realistic, circumstances. Write down specific details. (Where do you live? What do you love about your life?) Then spend five minutes each day visualizing these details. "Imagery can create vivid and, in this case, positive emotional responses. These images and associated emotions end up living in your memory almost as if they were real," says Peters. In the short term, compared with the world created in your mind, the once unbelievably aggravating everyday letdowns may become small and surmountable.

The biology of chill

Anyone can become more even-keeled using the mental strategies on these pages, but naturally irascible personalities might need to put in a little extra effort. Temperament, after all, is partly genetic. Think of the brain as a seesaw: On one side are the frontal lobes, the region associated with reasoning; on the opposite side is the amygdala, where emotions, both good and bad, are generated. In between, where the imaginary fulcrum sits, is the anterior cingulate, which mediates the opposing forces.

In each person, one side is inherently more influential than the other, explains neuro-scientist Andrew Newberg, M.D. What results is a person's temperament (an internal balance or emotional tone), which can shift further to one side or the other depending on external forces. These forces can be traumatic (a divorce), annoying (traffic), or health-related (poor-quality sleep, inadequate nutrition—both of which can trigger chemical changes that compromise brain activity).

For a hotheaded type, whose brain already seesaws toward the emotional side, negative events can exacerbate imbalance. For an even-keeled personality, the brain may tip over to the emotional side only ever so slightly. No matter which group you fall into, just a small push toward the reasoning area of the brain can mean the difference between a run-in with a colleague that ruins your entire weekend and one that you can leave at the office without a second thought.

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FRIDAY FOOTBALL PICKS

Today I just thought I'd pick the NFL playoff games for this weekend.  No way I'll make .500 for this entire season, but hey, so far in the playoffs I'm 3-1.  Let's see how I do this weekend:

New Orleans at Seattle.  My pick:  SEAHAWKS.  What goes into this pick is simple.  What do the Saints mainly want to do?  Have Drew Brees throw the ball.  But Seattle has the defense and especially the corners to really slow that down.  Weather reports for Seattle tomorrow indicate rain and 30 mph winds; that won't help Brees either.  These teams played a month ago or so and Seattle won convincingly.  I expect New Orleans to give a better account of itself this time, and it would not shock me if this was a significantly closer game.  But you have to pick Seattle here.

Indianapolis at New England.  My pick:  PATRIOTS.  You have to admire Andrew Luck and the Colts for that brilliant comeback last week.  One for the ages, no doubt.  But:  the Colts have that horrible penchant of falling behind early.  Doesn't seem like they've corrected that--and that will be death in this game.  This time their opponent isn't KC; it's Tom Brady and the Pats.  New England is unbeaten at home; the weather won't be great, and the Pats are used to it (the Colts meanwhile are a dome team); and Brady always seems to play well in the playoffs.  The Patriots will find a way to win this one.

San Francisco at Carolina.  My pick:  PANTHERS.  Here I think I'm going against conventional wisdom a bit.  Many like the Niners here.  After all, they were a Super Bowl team last year.  But:  this game is in Carolina.  The Panthers have a terrific defense, and that's been proven.  If you don't know who Carolina LB Luke Kuechly is, you will find out--he is one of the best defensive players in the game today.  So Carolina can go toe to toe with SF.  They beat them in SF earlier this year.  Cam Newton is tough to corral and his running ability can really cause a defense problems.  It's tough to go to 2 straight Super Bowls--San Francisco will find that out this weekend when a young, hungry team like Carolina knocks them off.

San Diego at Denver.  My pick:  BRONCOS.  Yes, we know; San Diego won in Denver a month ago.  Philip Rivers is playing well; so is their defense and run game.  This seems like a juicy upset pick.  And yet--Denver and Peyton Manning know what happened a month ago, too.  They've had time to prepare.  Most still think Denver is the better team overall--and so do I.  And I think that will show itself--look for that Denver offense to move the ball, score, and thus outscore a game Chargers squad.

IMPORTANT FOR TEENS: A HEALTHY BODY IMAGE

And while this is good for all teens, it of course is especially important to foster if your teen has Moebius Syndrome.  What I would tell such a teen is this:  Do you look like everyone else?  No.  But NOBODY "looks like everyone else."  We are all unique; we all have our own looks.  And your look is just fine.  Or, as the mom quoted in the story below says:

"As long as we're healthy and taking care of ourselves ... the way we are made is the way we are made and we should accept ourselves."

Read more about it:

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Six years ago, Dawn Larkin-Wallace, a mom of three, took up running to lose that 10 to 20 pounds of baby weight that just wouldn't go away.

She figured once she dropped the weight, she'd be off the treadmill.

What she could have never imagined is that she'd become a marathon runner who inspired her three children to start running, too.

"We're just a running family," said Larkin-Wallace of Baldwin, New York, who is part of the running club Black Girls RUN!, a national group encouraging African-American women to make health and fitness a priority.

First, Larkin-Wallace signed up 15-year-old daughter Kayla, a high school sophomore, for a race after realizing that the amount of running she did during her soccer games was the equivalent of a 5K.

With the "positive peer pressure ... and the competitive spirit" that exists in the Wallace household, she said with a laugh, "of course, her brother and sister decided that that's something they wanted to do, too."

Kimberly, 11, and Kevin Jr., 9, ran their first 5K's this year.

Larkin-Wallace said her goal is for "healthy living to become a lifestyle and not just a fad" among her kids, who also play a range of sports from basketball to soccer to lacrosse.

What she's also very mindful of is encouraging her children, especially her girls, to feel good about their bodies. A recent study found that two in three 13-year-olds worry about gaining weight.

Helping her girls feel good about their bodies

"It's always on my mind, and I have African-American daughters. ... I have to help them understand that because their body type is different than others doesn't make one better or more right than the other," she said during a conversation with her family in their home.

"As long as we're healthy and taking care of ourselves ... the way we are made is the way we are made and we should accept ourselves."

That isn't always easy, she added, especially when she goes clothes shopping with her girls.

"Total meltdown in the dressing room trying on jeans and I'm like, 'Well, Kayla, everything is not cut for everybody so you just have to find what works for you,'" said Larkin-Wallace.

"It's something I live with. It's something my mom lives with. She's going to have to live with it. It's just the way it is. (You) just have to find what manufacturer or designer works for you and live a healthy lifestyle and love yourself."

But what makes that harder than when Larkin-Wallace was growing up is that today's teenagers are inundated with messages in the media "telling them that they either need to be superskinny or they need to have this unrealistic ... video-girl body," said Ashley Hicks, who co-founded Black Girls RUN! in 2009. The organization, with 70 groups across the country, has approximately 60,000 members.

And it's not just girls who are experiencing body image problems. Boys are also flooded with images of what a manly man is supposed to look like, which can be just as harmful as the media's depiction of girls.

Hicks said the best way to counteract those messages is by "showcasing that not everyone who runs or is fit is a size 2 or a size 4. They're going to be size 8s and 10s and 12s and 14s."

"A lot of people are going to have curves and there's nothing wrong with that."

"Do I look fat?"

Up against the media, some parents might feel helpless when it comes to helping their teens develop a positive body image, but there's a lot that parents can do, said Anne Wennerstrand, a psychotherapist in private practice in Katonah, New York, who works with teens and parents to treat and prevent eating and body image problems.

CNN's Kelly Wallace: "Four words I try to never utter around my girls -- 'Do I look fat?'"

How we talk about our own bodies directly affects how our children might feel about theirs, she said.

"Are we asking 'Do I look fat?' or are we making excessive comments about appearance even in casual conversation?" said Wennerstrand, who is also on the faculty of The Women's Therapy Centre Institute.

"If parents can raise their own awareness of how much they're commenting about appearance, how critical do they feel of their own bodies, that's really where it starts."

Dr. Larissa Hirsch, medical editor for KidsHealth.org, added, "It's just hard for a teenager to grow up in a household where someone is constantly saying 'I look fat in this' and not internalize some of that."

The best advice for parents, Hirsch said, is to focus less on appearance and more on health, internal qualities and "things that your body can do, rather than how your body appears."

"Compliment them on things that have nothing to do with appearance: how well they shared with their brother, how nicely they stood up for their friend, how generous they were, things of that nature, trying to be supportive and positive and showing the importance of things that have less to do with appearance and more to do with the type of person you are," said Hirsch.

Starting healthy early

Parents can also help their kids by showing them, even when they're little, how to be healthy. That means a lifestyle that includes physical activity, but also eating right, and not making the mistake of missing meals and eating too much fast food and too many desserts.

"Seeing what the parents eat, that makes a big impact," Hirsch said. "Keep your kitchen stocked with healthy options. It's hard when you go to the kitchen to get something to eat and the things that you see are all of these snack foods that are filled with fat and salt and calories."

Helping children develop healthy habits early, even as young as elementary school or in the tween years, can set them on a healthy lifestyle path into their teens and beyond, said Toni Carey, the other co-founder of Black Girls RUN!

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In her early years and all through middle school, Carey said she was the "chubby kid in class," and that it wasn't until her adult years that she really started to take care of herself.

"I look back on that time and think, 'Wow, what if I started running in middle school or high school or just creating healthy habits, it wouldn't be so difficult now,'" Carey said.

"So that's why, we know that the moms are the key to making things happen in the household. If mom is being healthy and eating right, then everybody else will, too."

That's definitely the case in the Wallace household, where the children are following mom's lead in the kitchen and on the running track, and seem very comfortable with how they look.

"When you exercise and you feel good, it's like I don't need to look like a Victoria's Secret model," said 15-year-old Kayla. "I just need to feel healthy about myself."

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