A LIFE WITHOUT A SMILE

I like to smile, laugh and enjoy world together with my best of friends and family. I like to share my experiences with them, but, I hate it whenever I feel frustrated, uncontented, and disappointed. It caused me to feel vague and uncomfortable feelings. Though I felt these in different ways, I like it every time I feel the various dimensions of my emotions and personality. Why I keep on telling about emotions? As an ordinary individual with a simple life and contented to live within its circumference, I just saw the beautiful world that consisting of brilliant creatures that make me happier and happier each day passed by. I always love children. Ive remembered my nieces and nephews, I always like to play with them, as they reduce my stress from the outside world, one smile, gave me 1 day relief from exhausting day from everywhere. Id loved to go home, expecting them to welcome me at the door, saying ate!, every time they join me for a walk, it give tireless activity. Endless and indefinite happiness always there every time Im with them. So, I came to realization, how life without them? How life can be this enjoying if I cant see their smile? How life if I cant hear their cry because they are hurt physically and emotionally? Can I ask you, parents, how are your life without your children? Can you recall your sacrifices when you took care of them within 9 months inside your warm womb while nourishing him/her with your life, blood and spirit? What if in one click of your hand, you found out that your child doesnt have the ability to express their feelings through facial expression, can you accept your child? You could nourish and love them as you care and love them when they still in your womb? Its true that emotions together with gestures are ways to express your passion in an actual situation; neither in smile (to show happiness) nor in frowning or crying (to show sadness), we can express it physically. But, what if, a child can only express his/her thoughts through gestures? I have so many questions that needing an answer from you my readers. Can we just imagine if we cant smile, laugh, and frown? It seems so hard right? Who will be blamed if this happened? Our own body, science, God? Who? Is it possible? Just think ourselves in a body which possesses only the capability to use gestures just to express the emotions we feel right now but know facial expressions. For me, its so hard.

In relation to questions above, I want to share a documentary episode that Id watched one morning. This is from the factual documentation of Ms. Sandra Aguinaldo of GMA 7 IWitness. She covered here, a rare disease involving the facial nerve manifested by facial paralysis, for this reason, patient with this disease doesnt have the ability to smile or make even simple wink. They were in blunt affect. Even they are in pain, you cant see it in their faces. As the show is moving, I felt so pity to them, because all of them where trying to be normal as in an individual who can make faces. They study and mingle with people around them. They make friends but unlike other they find hard time. With the help of their parents they can able to survive and live in the surface of the earth without hesitations and hatred for somebody or anybody. This rare disease is called MOEBIUS SYNDROME. What is Mbius /Moebius Syndrome? Also Called 'Congenital Facial Diplegia' Mbius syndrome is due, in part, to loss of function of motor cranial nerves. Although von Graefe described a case of congenital facial diplegia in 1880, the syndrome was reviewed and defined further by Paul Julius Mbius, a German neurologist, in 1888and 1892. Because of these contributions, Mbius is now the eponym used to describe the syndrome. Both von Graefe and Mbius accepted only cases with both congenital facial diplegia and bilateral abducens nerve palsies as constituting Mbius syndrome. Mbius syndrome is a rare birth defect caused by the absence or underdevelopment of the 6th and 7th cranial nerves, which control eye movements and facial expression. Many of the other cranial nerves may also be affected, including the 3rd, 5th, 8th, 9th, 11th and 12th. There are four recognized categories of Mbius syndrome: Group I, characterized by small or absent brain stem nuclei that control the cranial nerves; Group II, characterized by loss and degeneration of neurons in the facial peripheral nerve; Group III, characterized by loss and degeneration of neurons and other brain cells, microscopic areas of damage, and hardened tissue in the brainstem nuclei, and, Group IV, characterized by muscular symptoms in spite of a lack of lesions in the cranial nerve.

How does the disease occur? Mbius believed that the condition was degenerative or toxic in origin and that it involved the nuclei of the affected nerves. Approximately 2% of cases appear to have a genetic basis. In addition, theories of vascular etiologies of the syndrome have many proponents. One such theory involves disruption of flow in the basilar artery or premature regression of the primitive trigeminal arteries. A second vascular theory is a disruption of the subclavian artery supply that involves interruption of the embryonic blood supply. The close relationship embryologically between the motor nuclei of the sixth and seventh cranial nerves explains the pathology of this congenital condition. Simultaneous limb malformations with cranial nerve dysfunction suggest a disruption of normal morphogenesis during a critical period in the development of the embryonic structures of these regions, most likely at 4-7 weeks of gestation. What are the signs and symptoms? The first symptom, present at birth, is an inability to suck. feeding, swallowing, and choking problems; excessive drooling; crossed eyes; lack of facial expression; inability to smile; eye sensitivity; motor delays; high or cleft palate; hearing problems and speech difficulties.

What are the medical treatments? There is no specific course of treatment for Moebius syndrome. Treatment is supportive and in accordance with symptoms. Infants may require feeding tubes or special bottles to maintain sufficient nutrition. Surgery may correct crossed eyes and improve limb and jaw deformities. Physical and speech therapy often improves motor skills and coordination, and leads to better control of speaking and eating abilities. Plastic reconstructive surgery may be beneficial in some individuals. Nerve and muscle transfers to the corners of the mouth have been performed to provide limited ability to smile.

The Many Faces of Moebius Syndrome "Let us not look back in anger, nor forward in fear, but around in awareness" A STORY BY ALICIA My mom told me when I was born (on 10/01/94) that the nurse new something about my disorder but she just said everything was fine. It might be only because I have a very minor case. After a while of having me at home my mom noticed I that no one could really tell if I was laughing or crying. She took me in to the doctor and my tear ducts had not fully developed, so that means my eyes did not produce tears. I went in for surgery at 1 year old to get that fixed. So now I have normal tears- now the problem is that I can't close my eyes fully so they tear up too much and it just looks like I'm crying. I grew up as a happy child; I thought I was just like everyone else. I figured out my own way of doing things like: using a straw, drinking out of a cup, when I swam I had to use goggles to go under water and when I slept my eyes would stay open just a little. It's all different than what you would think. It's been very hard during allergy season especially because my eyes can't always keep the dust and things out of my eyes or I cant squint from the sun. - now I have contacts but they haven't been working great, so for now I wear my glasses, and I don't have the worst eye sight so sometimes I can just see without glasses or contacts.For school in the beginning wasn't so bad, kids don't really notice that stuff. Once I got to about third grade I would get teased a lot about my smile that it was different than everyone else's. Sometimes I wanted to cry, I got in some trouble in elementary school for getting into fights with mean kids. My mom told my teachers about it but even the teachers still were really harsh about it, one teacher even called me names while taking my picture! In fifth grade things got better, people matured and I just started being me and it turns out that people love it! The start of middle school, sixth grade, Through the school year I was curious about this problem I had because all I thought it was, was just paralyzed muscles, I had no idea what it actually is. So that summer I started going to the doctor and the library and I learned that was I born with a mild case of a rare disorder called moebius syndrome/facial paralysis. The doctor did an MRI and tests, which I didn't like but he said that people with this can have heart problems, but no worries, I'm healthy! So I learned all about moebius syndrome and researched like crazy, and met the greatest people online who were willing to share their life stories with me. I dont know anyone in person with this disorder. I also started the school's dance team in 6th grade. It was a little tough with the smiling, facial expression, taking team pictures, and peoples remarks but no one stopped me from dancing. Dance is in my blood and I do it because I love it. In seventh grade I finally made a YouTube video, partly because I was really getting sick of the recurring comments from people and I just wanted to put it all out there. And that year I made incredible friends that support me and that I love. Then I got braces and it made my speech a little worse. It had already been difficult pronouncing things. Now I'm on my way to being a freshman in high school. I've become so much more open with moebius, I don't really like to have to explain myself to anyone, but I will so ask me questions

and talk with me about it instead of your idiot friends that know nothing about me. I now see this disorder as a blessing in disguise. I can't really put it into words I love who I am but it can be hard when people rip me down. I'm not one of the most popular people, especially at school I don't feel like I can be myself around everyone. I try to be outgoing but sometimes when I smile around new people they give me looks and I dont always want to give them a speech, but some people don't even notice. So ok. I know- who cares what other people think, uh me.? Oh, if you try to have a starring contest with me, you are going to lose, I have a ridiculous poker face (even though I don't know how to play poker). I have not had a boyfriend or even my first kiss yet, I don't really know why but Im still young so I'm not trying to grow up too fast. I'm still confused on who I am or what I'll become. I made a vow to myself that I'm going live up my dream and I hope to inspire people just as everyone inspires me. I love trying new things and I'm in love with dance and I'm big into cosmetology stuff, I would love to write a book or movie on my life experiences with moebius syndrome and rare disorders. A big dream of mine is to be on a talk show, like the Tyra Banks show. I have a special interest in people are different than others. I always try to understand where people are coming from and have great sympathy and respect for them. I feel so blessed for the people in my life, I could not thank or love them enough! I've had some depressing times but I learn to get through it and I couldn't do it alone. I love to put a smile on peoples faces, "I smile with my heart". I am a very happy and nice person, once you meet me, I promise you will never forget me. To all of you who have put me or anyone else down about how they look, whether it be in front of them or behind their back, just know that karma is a bitch- what goes around, comes around. Although, these individuals grew up possessed this rare disability, they face the world with head lift high because their families were there to support them despite of lax in their physical appearance. Though they experiencing hard time to understand their situation during their childhood years, as they were criticize by people who dont have enough knowledge about their situation, they overcome all of those, because of their family. I owe this individuals who live their lives to the fullest and their families whose patient are not limited to what they see but for what they feel. Its true that behind those lax, there are people who will fill that emptiness in your life and the unconditional love that we so-called are being felt continuously. Unconsciously, Ive learned about how faces are very important to us. Smiling gives me pleasurable feeling as it symbolizes contentment, and friendship. I can easily smile nut for them it really hard. Count your smile right now, as we were blessed to be given with this body which is perfectly made by God.

Showing and doing the best for own sake, is one reason why people achieve ones goal!
R.A.D.Coronado