This child can’t smile – he has Moebius Syndrome

Has anyone of you ever considered the value of a smile? It brightens people’s day and sets the pace for a bright future. Experts say that it takes more muscles to frown than to smile. Smiling not only relieves stress, it also lessens the pressure on the facial muscles, which probably explains why people who smile often look a lot younger.

The sight of a newborn infant makes everyone smile. The joy that a bubbly child brings can be quite contagious. But what if the child cannot smile or make any other facial expression? What reaction could that possibly elicit from others? We hardly notice the things that come naturally for us.

Recently, my friend Vicky Perez de Tagle introduced me to Maidi Asuncion, mother of Paolo, a child who couldn’t smile. I was inspired to share her story with you.

Paolo Miguel Asuncion is a nine-year-old boy with Moebius Syndrome. He was born on August 17, 1992. He has two older sisters – Tara, 14, and Trizha, 10; and a newly-born baby brother, Miguel. Paolo Miguel is a typical kid who adores Mickey Mouse and Barney.

When my daughter Ella and I met him, he was so engrossed reading an activity book. Later, he focused on reading the newspaper. We were told that some of his favorite hobbies are surfing the Net, calling up game shows and watching them intensely, exchanging e-mails with people from CNBC and CNN. He hopes to become a newscaster someday. There would be instances when he would be in a daze. He is very particular about time. In fact, to prepare him for our encounter, his dad had to inform him early enough. He dislikes abrupt changes in schedules or plans. He became fond of words as early as one-and-a-half years old and could sight read at three. He has a photographic memory and has become his parents’ source of information especially for forgotten addresses and telephone numbers.

Here is a poem written by his two sisters:

Paolo is our brother

We will not trade him for another

We wish that he will be able to live his life to the fullest

Because for us he is the best.

He has a rare syndrome

"Moebius" is its name

It takes away his smile

But the happiness he gives us is worth more than a mile.

Our brother, Paolo Mouse

He likes to be called that in our house

Loves to sing, dance and play

Is very energetic anytime of the day

I believe in what our Mommy always tells us

That he is God’s special gift for our family

For when you see him

You’ll see a young man who is always happy.

Paolo is a very responsible person

In our family, he acts as if he’s the eldest

He tells us to study our lesson

For he knows that we’ll have our test

We watch movies together

When you see him, he looks like a father

We love Paolo from the bottom of our hearts

One more thing, our brother is really smart.

What God forgot to put on Paolo’s face

He added in his heart...

The cause...

CONGENITAL

Moebius Syndrome is congenital. There are conflicting views about it being genetic although in some cases, there is an increased risk of transmitting the disorder from an affected parent to a child.

Symptoms include:

• Lack of facial expression

• Inability to squint and no lateral eye movement

• Clubfeet

• Drooling a lot, but Paolo can now control it.

• Has short and slim tongue and high-arched palate, leading to speech problems.

• He kept his head back when he swallowed or when he watched TV (even though the TV set is at his eye level) but this was corrected in time.

• Very seldom produces tears when he cries.

The Asuncions were never told that the effect of the Moebius Syndrome is the lack of ability to smile. Eventually though, as the years passed, they adjusted to their son’s permanent facial expression and soon learned to accept it. But Paolo’s parents are happy that although Paolo lacked the ability to smile, they are hardly disheartened for he does smile in a big way. In fact, Paolo has a great sense of humor and always cracks jokes. We were amazed at the sight of him sneezing and giggling after doing so. And he always says "Excuse me. "

A Rarity

So far, the Asuncions were informed by their developmental pediatrician about a girl here in the Philippines with a possible Moebius. The girl lives somewhere in Baguio.

Treatment

Infants sometimes require special bottles or feeding tubes to maintain sufficient nutrition. Strabismus (crossed eyes) is usually correctable with surgery. Children with Moebius Syndrome can also benefit from physical and speech therapy to improve their gross motor skills and coordination, and to gain better control over speaking and eating. Limb and jaw deformities may often be improved through surgery. In addition, In some cases, nerve and muscle transfers to the corners of the mouth have been performed to provide an ability to smile.

Bright Spots

Having a "Moebian" in the family has made the Asuncions feel closer to one another. Their two daughters always look after their little brother and treat him so dearly (although they treat him just like a normal kid because they don’t want him to be so dependent on them and they instill in his mind that he is no different from the others, that he can do anything that others can). Paolo may have a physical disability, but he is normal in many ways. He is able to fend for himself and shows love every chance he gets.

The Asuncions hope that by sharing this story, more people would become aware of the Moebius Syndrome. If anyone you know has the same symptoms like those of Paolo’s, chances are, that person has Moebius. The Asuncions have found support through the Moebius websites www.ciaccess.com/moebius or http://www.moebius1.org. You can also send me your thoughts at bizwrks@attglobal.net so I could post your letter for other people to have a chance to help you out.

Keep on smiling, you’re truly blessed! Have a very joyous Christmas celebration!