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:

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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.