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

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

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

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

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

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

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I JUST THOUGHT THIS WAS INTERESTING DEPT

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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MOEBIUS SYNDROME IN THE NEWS: AN UPDATE

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

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

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BOOKS FOR KIDS THAT FEATURE DISABILITIES

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

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

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

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

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

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

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

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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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