Faces of Moebius Sydrome around the World

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Dear Oprah: My name is Tim Smith. I'm 45 years old and I have a condition called Moebius Syndrome. My friends and I would like for you to do a show about people who have Moebius Syndrome. Before we tell you why we want you to do a show we want to tell you what Moebius Syndrome is, and we want to tell you about some of the extraordinary people who have Moebius Syndrome. What is Moebius Syndrome? Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can't smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally. Other cranial nerves may be affected, especially the 3rd, 4th, 5th, 9th, 10th and 12th. There may be skeletal involvement causing hand/feet abnormalities and/or club feet. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, and weak upper body strength may also be present. Approximately 30% of children with Moebius syndrome are on the autism spectrum. Symptoms May Include: · Lack of facial expression; inability to smile · Feeding, swallowing and choking problems · Keeping head back to swallow · Eye sensitivity due to inability to squint Motor delays due to upper body weakness · Absence of lateral eye movement · Absence of blinking · Strabismus (crossed eyes) · Drooling · High palate · Short or deformed tongue · Limited movement of tongue · Sub mucous cleft palate · Dental problems · Hearing impairment · Articulation / speech disorders · Minor mid-line anomalies · Club feet · Hand/feet deformities Although they may crawl and walk later, most children with Moebius Syndrome eventually catch up. Speech problems often respond to therapy, but may persist due to impaired mobility of the tongue and/or mouth. As children get older, the lack of facial expression and an inability to smile may become the dominant visible symptoms. Moebius Syndrome is sometimes but usually infrequently, accompanied by Pierre Robin Syndrome and Poland's Anomaly. How does it occur? Moebius syndrome is thought to be genetic, and most cases are sporadic, occurring once in a family. The recurrence risk is thought to be extremely low, and one source has quoted it to be 2%. However, there are some families in which multiple people have Moebius Syndrome. Research on the causes of Moebius Syndrome is not conclusive at this time. How is it treated? Infants sometimes require special bottles (i.e. Haberman or Pigeon Feeder) or feeding tubes to maintain sufficient nutrition. Strabismus (crossed eyes) is usually correctible with surgery. Children with Moebius Syndrome usually benefit from physical and speech therapy to improve their gross motor skills and coordination, and to gain better control over speaking and eating, as well as occupational and sensory integration therapies. Bradley's story as told by his mother Melanie Dear Oprah, I will never forget the morning that Bradley was born. I was at my sister-in-law's house having Christmas dinner with family on Christmas night when I went into labor. The excitement that night as everyone was timing my contractions and debating whether or not I should go to the hospital was indescribable. Bradley came into our lives on the morning of December 26th, 1998. He was our first child and we were so glad to be starting our family. The doctors discovered during my pregnancy that Bradley had a blockage in his left kidney, but that was all the doctors discovered at that time. I was extremely sick the entire time I was pregnant. I would have fainting spells and was very week and was losing weight instead of gaining it. I was extremely worried that was something was wrong with the baby I was carrying inside of me. The doctors assured me all that was wrong was the blockage and it could go away on it's own as Bradley grows or it could be corrected with surgery. When Bradley was born we noticed that he wasn't blinking, or moving his eyes. He just stared blankly at the ceiling. The doctor told us that he had temporary facial paralysis that they believed was caused due to pressure in the birth canal. Bradley was unable so suck from a bottle due to the paralysis. They thought it would only last a day or two. The hospital sent us home two days after he was born and he was only able to get down tiny amounts of formula with us coaxing his mouth around the nipple on the bottle. We decided to take him back to the hospital the day after we came home with him cause we knew he wasn't getting enough nutrition. The doctors then put in a n-g tube. Which is tube that is inserted through the nostril and runs into his stomach and that was how he was going to be fed. We took him to the doctor a few days after returning home for the second time because he was steady losing weight. The pediatrician told us that he didn't have any idea what was wrong with our son but he would do anything in his power to find out what the cause was. He sent us to the Egleston Children's hospital in Atlanta. The doctors there didn't give him much hope as he continued to lose weight. They performed what seemed like hundreds of different tests on him. They kept him in the hospital for several weeks. He finally got to go home when he had started to show some weight gain. He came home did really well on the tube feedings. But eventually he started losing weight again so once again we were sent to the hospital in Atlanta. This time they put together a whole team of doctors to help determine what was the cause of Bradley's paralysis. They still could not come up with an answer to that question. They told us they wanted to take out the ng-tube and give him a g-tube instead, which is tube inserted directly into the stomach. They told us they didn't think he would ever be able to eat on his own. I told the doctors absolutely not. I knew with all my being that my child would one day be able to eat on his own. I just had a gut feeling so I refused the surgery. So again we went home with no answers. We started noticing that he was reaching any milestones after a few months. He wasn't holding his head up at all, he wasn't starting to coo and babble. And he still wasn't focusing his eyes on anything. We also started noticing that he wasn't responding to sound. After several more trips to the hospital and doctors visits in Atlanta we learned that our son had profound hearing loss in both ears. He was given hearing aides but he hated them and refused to wear them. They didn't help him that much so we didn't really push the issue and we stated teaching him sign language. He took to it like a pro. He is one smart little boy.One day I was home alone with Bradley when he was 8 months old and I laid him on the bed to take a nap. I didn't think much of it as he had not yet started to roll over, sit up, or even hold his head up that great. I kept checking on him often. After a few minuted I heard a thud and then he let out an awful cry. I rushed into the room to find that he had somehow fell off the bed. I picked him up and looked him up and down for any injuries. Luckily I didn't find any and he calmed down pretty quickly. He was still crying a little bit so I decided to try and go through the routine of feeding his. We always tried to get him to take the bottle before we connected the feeding tube. On this day however...to my amazement he drank the whole 8 ounces from the bottle as if he had been doing it all his life. A few weeks before he fell of the bed a friend of mine that was from Israel, told me she was going to be traveling home to Israel for a visit with family. She asked my mom and I if we would like to write a prayer for her to put in the Wailing Wall while she was, of course we said yes. I have always had a strong belief in God, and knew everything was in his hands. Everything happens for a reason. I later found out that the very day Bradley fell of the bed and drank from a bottle all 8 ounces, was the day my friend was placing the prayers in the wall. It brings chill bumps to my arms this day thinking about it. I called the doctor on that day and told him about Bradley drinking the full bottle. He told me to continue giving him the bottle first before hooking up the tube. So I did this every time I fed him. After a few days of him drinking every bottle on his own we said goodbye to the ng-tube. After a few more months the eye doctor started trying to correct his eye problems. It started with botox injections to close one eye at a time because he had developed ulcers on his corneas due to his lack to produce any type of tears or moisture. The doctor eventually implanted him with springs in his eyelids when he was two to make his eyes stay shut and he had to work to open them. Bradley was still not reaching milestones. He was still not able to hold his head up that well. He had learned to crawl with his head down scooting it across the floor. He had not yet learned to walk and eventually had to use a walker. When Bradley was 18 months old his team of doctors concluded that the most probable diagnosis was Moebius Syndrome. The springs in his eyes were eventually taken out and he was able to blink on his own and started developing a few tears. The blockage in his kidney went away on it's own as Bradley grew. Bradley continued to make great progress with everything, physical therapy, occupational therapy and sign language. Last year on January 3rd, 2008 Bradley received a cochlear implant to help him regain hearing in his right ear. This was an outpatient surgery and the moment Bradley got home from the hospital he took off walking on his own and he hasn't stopped since. He no longer uses the walker at all. He is in audio verbal therapy to help him learn to understand what he is hearing and he is making great progress with his speech. He is already saying a few words. Bradley lost his father last year in May. His dad (my ex-husband) was killed in the war in Afghanistan. With little communication skills we are unable to fully explain to Bradley where his father is and what happened.I know that one day I will be able to sit down and explain to him that his father is a hero. Thanks to technology and the cochlear implant this will be possible. I know that he will eventually talk one day. His therapist truly believes this too. He wants to talk! Bradley just turned 10 years old the day after Christmas. He is a very healthy, happy and loving little boy. He amazes us everyday with his determination. Bradley is an inspiration to us all! Thanks Melanie Brewster " I believe in miracles..I know because I'm the mother of one!" My Son Daniel Dear Oprah: My son Daniel is the youngest of our 6 children. Pretty normal pregnancy, rough delivery. He died after he was born and needed to be resuscitated. Doctor's could tell he didn't "look" normal. Because of problems with SVT (rapid heart rate) he was rushed to Strong Memorial Hospital in Rochester. While he was there they did other testing and found he was missing his Corpus Collosum along with the diagnosis of Moebius Syndrome. He can't blink, smile, close his eyes, and everything mid-line is smaller. Maybe that is the same with everyone affected with Moebius.? Going to the ocean and beach is a big NO NO. The blowing sand is to much for him, even with protective eye wear. The has a very hard time in the summer months due to the bright sunlight. It's better for him on cloudy days, or later in the afternoon when the sun is down. He has had 3 eye surgeries which has helped straighten his eyes a bit. He has little or no depth perception. He has had major dental surgery: caps, crowns, pulled teeth, etc, with more surgery scheduled for the summer, due to the small mouth and jaw line, and also due to the excessive drooling and mouth breathing. Daniel does have some learning disabilities but tries so hard to compensate for his short areas. One thing we don't do any more, which is silly but the older Daniel gets, the more he understands when people are mean, so...... we don't get our pictures taken at photo centers anymore. The last time I did, the lady couldn't or wouldn't get it through her head that he couldn't smile. She kept saying, oh yes he can, he just doesn't want to, and things like that. No amount of trying to explain to her would convince her. So, we just don't put him through that anymore. Some things just aren't worth it. He is such a joy. Everyone we meet says that. There is something about Daniel that draws people to him. He has such a sweet and loving personality and I think that is what people see. Jeanette Norman The Long Journey! Dear Oprah In 1990 I was blessed with the birth of my baby boy - something I had waited for all my life. There was only one catch – he couldn’t suck. At the time of his birth, a pediatric neurologist told me that he had something called Moebius syndrome, and that meant he would never smile. I accepted that, forgot the name of the syndrome, and took my little boy home. For the first 2 weeks I bought every type of nipple I could find trying to find one that he could suck from. I asked all my friends how to get a baby to suck from a bottle and they thought I was nuts – they all said ‘you just put the bottle in the baby’s mouth and he will take the milk.’ It didn’t happen. After a few weeks of his losing weight and extreme frustration, I burned a bigger hole in the nipple, put it in his mouth, and he began to chew on it and get milk. I was thrilled! For the next several months we held his checks shut, put the nipple in his mouth and he chewed the nipple to get the milk. I kept thinking there must be other families who had children with Moebius syndrome and adults with Moebius, and I was determined to find them. After a long search, I received a letter from NORD telling me the names of craniofacial support groups that might be able to help find someone else. I wrote to those groups, and on Sean’s first birthday I received a letter from Forward Face giving me the names of 2 other mothers who were searching also. I immediately called Lori Thomas, whose 3 year old Chelsey had Moebius and they lived four miles from us! She invited Sean and me to her house – that was in September of 1991, and the rest is history. We now have the Moebius Syndrome Foundation which helps sponsor research into the genetics of Moebius syndrome, a medical advisory board, conferences every 2 years, newsletters 4 times per year, a website, an educational DVD. . . the list goes on and on. With the help of the internet, support groups and networking are available in all corners of the world. As for Sean, he’s now 18, the captain of his high school academic team, announces all of the sports for his high school teams, and will go to college to major in communications this fall. Because of Moebius syndrome we’ve made friends all around the world that we would never have known if it weren’t for this rare neurological condition that brings people together. Vicki McCarrell President Moebius Syndrome Foundation Dear Oprah: Crossed and Crooked My Life by Leslie Van De Car-Dhaseleer updated February 2009 On a Sunday morning in October of 1955 the hospital was sparsely populated. Before leaving for lunch, the doctor checked on my mother's progress telling her she had plenty of time before delivery. Shortly after, I arrived unassisted. It seemed that all the staff was truly out to lunch! It was obvious something was different about me. My head was lopsided, my eyes severely crossed and my feet were clubbed. There were feeding problems right away with my mother having to hold my mouth to help me nurse. My tongue curled off to one side, while my eyes did not blink or move properly. Local doctors thought I was blind. From that day on, my mother dedicated her self to taking care of me, afraid to allow others to do so. At about two years of age my crossed eyes were straightened and my tear ducts opened several times. I can remember seeing the hospital lights through the gauze bandages and smelling the strong odor of disinfectant, which makes me ill today. With bandaged eyes, I fumbled like a tiny baby bird trying to find the spoon filled with jello. The hard leather soled shoes I wore to correct my clubbed feet became lethal weapons when trying to be held down by medical staff. My mother soon had other problems to worry about, like my fathers illness. He had always been sickly as a child and was diagnosed with Nephritis of the kidneys at the age of eighteen. When I was just six years of age, my father lost his battle, leaving my mother to fend for the family. At the time of my father's death, I had been in school over two years, starting kindergarten early at the age of four. I had no learning difficulty and remember loving to get out of class to go to speech therapy. My teeth became a problem as soon as they came in, decaying no matter what we did. I missed field trips and special days due to painful teeth. From the outside people saw a frail, tiny, crooked little girl. To me, on the inside, I was a strong, over sized, energetic girl who enjoyed wearing dresses with lace and frills! I soon found out that lace and frills didn't go along with turning upside down and climbing trees. I loved heights and would climb anything that got in my way. I gained much notoriety and attention when at age eight, I learned to walk on my hands. This attention seemed to draw away from my odd appearance. Staying in the same school for all of my elementary years helped to control teasing by classmates. When I was taunted, usually by older kids, my brother made sure I received apologies, sometimes through the taunters tears! My mother told me when I was teased by children, I should feel sorry for them because they didn't have parents that taught them any better. I was gullible and did just that, which kept away bitterness that might have been sewn. At age thirteen my bad teeth were affecting my health and appearance. They were all pulled and replaced by dentures. During these years I had been to a Chiropractor for regular treatments, Ophthalmologists, Optometrists, Neurologists, Dentists, Oral Surgeons, Orthopedic Specialists, Family Physicians and many hospitals and clinics. No one mentioned Moebius Syndrome. My mother always called my difference a paralysis when it was talked about, so that was all I knew. After starting junior high school, It seemed that each day was an obstacle. My fellow students whom I'd known all of my life, and some I considered very close friends, didn't want to associate with me, afraid they might not be accepted by others. Every day I was taunted and called names, some days worse than others. I can remember my stomach turning into painful pulsing knots when I had to enter a room with a lot of kids. This followed me through high school. Academics just didn't seem to sink in with my mind always dodging ridicule. I did not date, go to dances or join social clubs. Social events at school would have been torture! After high school I was set up on a blind date. It went very well and I ended up accepting an engagement ring, but later came to my senses and returned it! My cousin helped me get a job at a restaurant called the Purple Pickle. I got along very well with all my co-workers and dated an employee of another store in the mall. It was great for my self esteem and I had a great time with my new friends. I was treated with respect and accepted for who I was. Being very independent and daring all of my life, and having a small inheritance just waiting to be spent, I visited the travel agency in the mall. Making only $1.68 an hour, I went back and told my boss I needed time off because I had just bought a trip to the Orient and then went home and told my mother. My boss took a lot of flak from customers telling him he was paying me way too much! My poor mother just shook her head and wondered what would be next....what a trip! I went to a new family physician that suggested I go to the University of Michigan Medical Center for information on my facial paralysis. I did, and at age seventeen first heard the words Moebius Syndrome. I had three re constructive surgeries, including the Temporalis Facial Sling. I planned all surgeries on holidays from college. After two years of school I met my husband Carl on another blind date. I was so awe struck the first time we met I told my mother he had gorgeous brown eyes; the truth was they were gorgeous but they were blue! He was all I needed so I quit school to marry and have children. We had two handsome, healthy sons with no signs of Moebius. I had always been told that my condition was not hereditary so the thought of our children having Moebius didn't cross my mind. In fact, Carl and I never really discussed my condition until I found the web site on my computer at age 41. My adult life was spent raising my children. I was very active at their school and made myself well seen and well known to their school mates. Children were curious, when I was asked about my appearance I explained that we are all different, such as hair color, eye color, etc...and when I was born I looked like this. For several years I owned my own business with my husband. It was a temporary employment service placing about two hundred employees in factories. Moebius did not get in the way of my success. Interviewing, hiring and directing over five hundred employees a year was accomplished with respect and admiration from those employees and business associates. I took private pilot lessons during that time, becoming a budding pilot. Later on we moved to Northern Michigan I became the Director of the Low Vision Department at a senior citizen agency. I loved working with seniors and found that I was accepted by the blind quicker because they couldn't see my facial difference. In 1998 I attended my first Moebius Syndrome conference. This was an amazing, life changing experience for me. With the Internet becoming more and more prevalent, I not only found others with Moebius for the first time but my husband Carl also found others. I lost my husband to an Internet romance, we divorced in the year 2000. Starting over, newly divorced at age forty five was pretty tough. Struggling to get on my feet, I tried working as a corrections officer at our local jail, that lasted for three long months. I eventually landed a job that was really great for me. I worked for our local Intermediate School District as a Family School Liaison/Home Visitor in the Early Education department. I am also a self taught photographer working on weddings, family portraits, high school seniors and groups. I became a grandmother to a set of twin boys in 2005, they have plenty of facial expression and show no signs of Moebius Syndrome. During this time I met the most wonderful man in the world Allan Dhaseleer. We met during a DivorceCare program at his church and became best friends. He offered to have a Moebius adult get together at his home one summer. I didn't know it at the time but that was his introduction to my Moebius family and part of the world he would be sharing with me. We married in 2005 and he has attended two conferences and two get togethers. Allan and I together have six children and five grand children and live in Charlevoix Michigan. For most of my life Moebius Syndrome has been little more than a nuisance. In my forties my vision began deteriorating, with severe dry eyes causing debilitating results. I had gold weights implanted into my eye lids to help them close. I have recently had a Tarrsoraphy, a surgery to sew the outside corners of the eye lids closed which keeps a little more moisture on the eye protecting the corneas and a cataract surgery. Wearing protective eye wear, such as goggles and sun glasses has become a must. After finding others with Moebius Syndrome and attending the conferences it felt like I had found a family I didn't know existed. I am very thankful to the Moebius Syndrome Foundation for enhancing my life. I became very emotionally involved, especially feeling a kinship with the children. I wanted them to have a better life, with freedom from societies stereotyping. I believe that people with a facial difference can't afford to be shy. We need to let others know we are just like everyone else. I am normally outgoing and very social. I learned somewhere along the way that when I am stared at, instead of crawling under a rock, which I always felt like, that just opening my mouth and talking breaks the stares and tension. There will always be some we can't win, but making friends is a challenge for me and I have gained much, much more than I have lost. I also believe that children with Moebius need a strong family to support them and give them the self esteem they need to deal with life. We all have to travel down the road of life alone. When the world tells us we aren't as good as others we need to know the truth! An email from Bob Dear Oprah, Recently i paid a visit to Tims website and had a good read as well as watching the video, after seeing and reading through his website i am so thankfull for people who go the extra mile and wave the flag of confidence and determination, when i was born i was literally given up for dead as i was in a bad state and the medical team had not a clue what was wrong with me or really what to do, and over my life time i have heard and read of so many stories of those who have Moebius and haveing such difficulties along their path of life because no body really wants to take up the fight and highlighting Moebius, yes their is small pockets around the countries looking into Moebius and yes even the BBC News 24 and some local and daily papers in the UK, but it is so like hard work, Moebius and I plays a small part in highlighting this rare condition but we need to see and hear the medical bods in all countries stand up for the research into Moebius syndrome, i thank God that i was not brushed aside and left for scrap yard, i come across many who have Moebius, and hey what a fantastic bunch we are!! all unique all individual and special...A BIG THANKYOU TIM FOR YOUR HARD WORK AND COMMITMENT TO US..........................you have my support and vote in all that you do...Bob Kari's Story Dear Oprah, My name is Kari Argall, and I am 22 years old. I was born with Moebius Syndrome and would like to share with you a piece about what it was like growing up with it. "One-Handed Bandit" By: Kari Argall My pale cheeks reddened as I slouched in my seat. I was 12 years old and sitting in my bra and underwear. When the doctor came in the room, my cheeks burned with embarrassment. Even though I wore undergarments, I felt naked in front of this older man with the bushy mustache and thick glasses. The doctor looked at me, cocked his head to the side, and raised his eyebrows. He told me to stand up and bend down and reach for my toes as he examined my back for scoliosis. He gazed at my mother, who was also in the room. "Her back looks fine," the doctor said to my mother. "By the way, what kind of drugs did you take when you were pregnant?" My cheeks now felt like hot lava as my emotions went from embarrassment to anger. I covered my deformed right hand, which looked like a puppy's paw, with my left hand and looked down at the floor. My mother never took drugs when she was pregnant. I was born with Moebius Syndrome, a form of facial paralysis, and there is no known cause. People with Moebius can't do things like smile, blink, raise their eyebrows, or pucker their lips. They can also have problems with sucking, drooling, and swallowing. Deformities of limbs are common too, which is the reason my right hand looks like a paw. I also have a club foot and webbed toes. I couldn't be breast fed when I was a baby because I wasn't able to suck properly. My parents had to push the sides of my mouth together so I was able to suck on a bottle. Pretty soon I started holding my hands up to my mouth and sucked on the bottle by myself. Even when I was a baby, I didn't let Moebius hold me back. As I grew up, the name-calling was brutal. Kids called me names like "Captain Hook" and "One-Handed Bandit." They would also tell me to smile and then laugh when I couldn't do it. I tried not to let the cruel kids get to me though. I was a stubborn, determined child, insisting I could do everything the other kids could do. I learned how to tie my shoes. I learned how to cross the monkey bars. I learned how to rollerblade, even though my balance wasn't that good because of my club foot. In gym class I swung the bat and heard the crack of contact. I was a goofy child, always ready to make people laugh. According to my family, I had quite the hardy laugh. That's how I showed people I was happy, through giggles and gleaming eyes instead of grins. When I was 10 years old, my family heard about a girl in California who had the very first smile surgery. Nerve and muscle was taken from the inner thighs and implanted into the face. The nerve was connected to the biting nerve, so when one bit down, a smile was created. My parents and I decided to pursue the smile surgery. When I was 11 years old, we met with a doctor in Madison. The doctor said he wanted to test how much nerve I had in my face. I was given a little cup of what I thought was numbing medicine. Then the doctor stuck needles all over my face. To my shock and displeasure, the medicine was only a sedative and didn't numb my face at all. I did have some nerve in my face and felt a sharp prick as the needle was shoved in near my jaw. I was deathly afraid of needles before, and after that experience, I wanted nothing more to do with the smile surgery. A few years went by and as I matured, I decided to revisit the idea of having the smile surgery. When I was 15 years old, I flew to California and a well-known doctor performed my surgery. Only one side of the face was operated on at a time though. A few months later, the other side was operated on. There was a complication during my first surgery. A blood clot developed in my face, and I was rushed into emergency surgery because the swelling was about to block my breathing passage. My face was so swollen I couldn't open my eye. There were no complications with my second surgery though. It took a month or two for the nerve and muscle to start working, so after my surgeries my family and I anxiously awaited my first smile. Slowly, the sides of my mouth began rising. I remember standing in front of the mirror, marveling at my new ability to smile. Tears streamed from my grandfather's gentle eyes when I smiled at him for the first time. When I stood face to face with my aunt and smiled at her for the first time, she smiled back and asked me why I was staring at her. She was so used to naturally smiling back at people that it took her a few seconds to realize what was happening. I've been able to smile for six years now. I actually can't remember what it was like not to be able to smile. I often wonder if people who can smile realize what a gift it is. I sure don't take it for granted. I still get a thrill when I'm walking down the street and someone passes by and smiles at me, and I'm able to smile back. When I was younger, I used to think I was a freak because I had Moebius. When people stared at me, my shoulders slumped and my head dropped. I realize now that having Moebius makes me unique. All the years of teasing caused me to become a stronger person. I have empathy for people and am determined to spread the word that just because people may look different doesn't mean they are freaks. Being different does have at least one benefit. I won't have many facial wrinkles when I get older. ********Roland's Story Dear Oprah, I was born on March 7, 1951 in Bethesda, Maryland at the National Naval Medical Center. At that time, my dad was serving at the Pentagon as an officer in the U. S. Navy. Our family resided in Falls Church, Virginia (a D. C. suburb) on and off for nine years while Pop served in different capacities at the Pentagon. While growing up, we also resided in San Diego, California, Newport, Rhode Island, and Ottawa, Canada. Military families move around quite a bit, and we were no exception. To some degree this is tough on kids, but then you learn to adapt, accept changes, and learn about new places, etc. So, in short, I felt that our nomadic lifestyle was beneficial rather than detrimental I was diagnosed with Moebius Syndrome at age five. I had plastic surgery performed at that age at the Naval Medical Center to place a surgical “sling” fashioned from my leg tissue which ran under my lower lip; this was done to correct my drooling problem. Otherwise, I have had no other surgeries. I’m also blessed to be in good health. I do not recall feeling especially alone with respect to my having Moebius, or wondering if there were any other people “out there” with it. I was basically a normal kid who was happy with the way he was. Having said that, I don’t believe I would have elected to have smile surgery had it been available in the 1950’s or 1960’s! I’m definitely not interested in it today. After all, I’ve lived over half my life, and have no desire to alter my appearance. Like Popeye said, “I yam what I yam” (or some such thing!). However, I had issues with bullies and teasing! I believe that’s something that I share with every other adult who has Moebius. Undoubtedly, it was one of the worst aspects of the whole experience! Some of those kids were so nasty and relentless! When I was 14, Pop retired from the Navy and we relocated to Lafayette, Louisiana (near my paents’ small hometown). I entered high school there, and went on to attend what is now the University of Louisiana at Lafayette, graduating in 1974. In 1981, my employer at the time transferred me to the Houston corporate office. Within a few years I had earned a masters’ degree at the University of Houston and had started working in the City of Houston Human Resources Department, where I am still employed. I also married (and subsequently divorced) in that same period. My sister Anne Broussard, a nursing professor, sent me an article from a nursing journal in 1995 which was essentially an advertisement for the Moebius Syndrome Foundation (MSF) and support network. I was soon in touch with Vicki McCarrell (current president of the MSF) and began receiving their newsletter, speaking/communicating with others having Moebius, etc. I attended my first Moebius conference in 1998 – it was truly an emotional, eye-opening experience! I’ve attended each conference since, and co-chaired the 2003 conference held here in Texas. I also serve on the MSF board. Over the past 11 years or so I’ve made many wonderful friends in the Moebius community. I feel as though we are family to an extent. None of us really wants to have Moebius Syndrome, but since there’s nothing we can do to change that, we can certainly deal with the resulting issues and challenges. That’s what the MSF and network are all about; to raise awareness about Moebius and to conduct scientific and medical research into its possible causes. - submitted by Roland Bienvenu ******* Katie's Story Dear Oprah I have never met anyone who has Moebius but I recently started talking to those to have Moebius, and it has been very eye opening, because I didn't realize what other people wne through with the condition. I wasnt award of how mild the case that I have is. I was asked on the day of my ten year anniversary of my surgery if I would ever consider getting the smile surgery, and while I don't completely shut the door the the oppertunity, for me, and my life, I am happy the way that things are right now. I feel like God has blessed me with this, rather than cursed me, because as a result of Moebius, i think I am a much better person than I ever would have been without it. I have really learned that you can't judge someone by how they look. I know that we all come in different situations, whether self inflicted or not, and that has influenced me into one of my dreams, of going to africa and working in humanitarian aid. That is my ultimate goal of what I would like to do careerwise. I love to help others who can't help themselves and I think its a result of Moesbius and the trials I have gone through with it. I am truly grateful for moebius and everything it has taught me. ********** Tim's Story Dear Oprah, I was born in 1963. At that time if a child was born with a deformity, impairment, or disabilty they were automatically labeled as being retarded and the parents were informed if they lived they would need constant care and supervision. After my birth the doctors didn't give me more than a few weeks to live. They had no clue what was wrong with me. They thought my birth defects were caused by diet medicine my mother took before she found out she was pregnant. My mother never knew differently and took the blame with her to the grave. I could not suck on a bottle and I couldn't move my eyes. They said I just stared off into space even when I was sleeping. They had to give me iv's through my feet because that was the only place where they could get a needle in. With the fear that I was going to starve to death a nurse who''s name I never knew took it upon herself to try and feed me. When she got off of her shift she would come in my room and feed me with a spoon. It was the only way they could get me to eat. As you can imagine they could only give me a little bit at a time so feeding was a full time job. The nurse, my mom, and my grandmother, took turns feeding me. Thanks to the nurse, my mother, and my grandmother, I made it past two weeks. Still the doctors told my parents I probably wouldn't survive more than a few years and if I did you know the story.... I don't remember much of the first two or three years of my life. I remember having to go to the doctors often. No fun at all. My parents did everything they could to make sure I got the best medical attention they could afford. My dad's medical insurance would not cover me because at the time they would not pay health care for children who they deemed to have no real hope. My mom taught me how to read when I was four so I would be ahead of the curve when I started school. I remember in first grade we had a huge copy of "The Little Red Book", which sat upon an art easel. Everyone would take their turn reading it. When it came to my turn I would read it perfectly. Unfortunatly the teacher couldn't really understand me and since my eyes never moved she assumed I was just copying what the other kids had done. Almost every week my teacher and the principal would take me to the class for the special ed and the mentally retarded and say "Tim wouldn't you like to be in this class with other people like you?" Every time I would say "no." My parents fought the school system tooth in nail to keep me in normal classes. Eventually a compromise was reached. The school system told my parents they would allow me to stay in normal classes if I passed a series of tests which measured your apptitude and skills. They said if I didn't pass the tests I would have to be moved into other classes because I would be a disturbance to the other children. I remember taking the tests but I don't remember what they were about. I scored above average on every test. The person who conducted the tests became my parents ally and shortly after that the school system backed off. Because I looked different than the other kids. Because I couldn't speak clearly. Because the only direction my eyes would go was cross eyed, I was teased every day. The other kids wanted the teacher to ask me a question just so they could hear me answer it and when I did they would laugh. I can remember a forth grade teacher who laughed along with them. The teaseing continued through elementry school. I was a wimp and whenever someone teased or hit me I would go running home to my parents crying. When I was in seventh, eigth, and ninth, grade I became friends with some of the so called cool kids and I became cool by association. Unfortunatly when I was in eighth grade my father died of pancreatic cancer so my life started to take a turn for the worse. My father was my idol and inspiration. Somehow my mother managed to pull me through it and I continued to do well in school. When I was in ninth grade a guy who used to pick on me all the time cornered me in the boys bathroom and started hitting me. I knew I couldn't go home crying to my mother. She was at home fighting for her life in a battle against cancer. I had no choice but to fight back. To make a long story short when I left the bathroom he was laid out on the floor. The next time I saw him was in the Principals office and he was crying on his moms shoulder. From that point forward I never had any more problems with it. Every person who chose to fight me and there weren't many always went home crying to their mom even as an adult. During the summer between ninth and tenth grade my mom passed away from cancer. She had battled it every since I was in forth grade. My brother and my sister continued to stay in my parents house, but I essentially raised myself. Over the next decade I drifted! I didn't finish high school, but I actually got my GED before my class graduated. The test was too easy. I got into a little trouble. Had a few adventures. I never got in trouble with the law. My fear of going to prison kept me from that. My adult life went pretty smoothly. The moebius never got any worse or better. I amazed the doctors. My pediatrician even told me so when i ran into him in my mid twenties that he was shocked I did so well. I was supposed to die within the first few weeks. Then within the first few years. Then I would never make it into puberty. Then I wasn't supposed to make it past being a young adult. To be completely honest, all joking aside. i'm actually afraid to go to the doctor to this day becase I'm afraid they will tell me I'm healthy and will live a long normal life. :) I didn't actually find out I had Moebius until my ex discovered it by going through old medical records. I thought I was the only one out there alone in the world. When i finally reached out to others with Moebius a whole new world opened up for me. I've met a lot of kind and caring people. Looking back it's been a pretty good life. I've had some fun times. I've gone on some great adventures. I've stared death in the face and beat it. I've made some great friendships which have lasted for decades. I lived, I learned and I've loved. When I was in early fourties I met and feel head over heels in love with the girl of my dreams. I am not sorry I have Moebius Syndrome. If I could change it I wouldn't. Everyone wants to be a unique individual. Everyone wants to be part of something special. I was lucky i was born into a group of very special people who I proudly call my friends. If it weren't for me having Moebius syndrome I don't know if I would have made it through those teenage years after my parents died. Having Moebius Syndrome made me a stronger, better, and wiser person. Everyone has regrets. There are always things you wish had been different. I've made mistakes in my life. Some really bigs ones. Sometimes when I felt threatened or when someone tried to take something away from me I got mad and I stooped down to their level to try and pay them back. When I did this I lost big. I'm sorry! I wouldn't trade having Moebius Syndrome for anything in the world. But if I could have been granted one wish. I would have wished I had full movement of all of my facial muscles for just a few seconds. Just long enough to have been able to show my ex just how much I truely loved her before I lost her. Tim Smith ********** This is an email sent to the Moebius Chat Group. As soon as I read it and saw Ben pics I knew I wanted to tell his story on this page! / Benjamins story as told by his Mom Dawna / Just wanted to say hello and how happy I am to find this group. My son Benjamin, born Sept. 30th 2006 has Moebius. It's been a long road but so worth it. Benjamin is such a joy and blessing to our lives. He has also been diagnosed with another sydrome call VACTERL. When he was born (at home) he was hardly breathing and stayed blue. He was rushed to the hospital and then life flighted to another hospital. He was born with a TEF which is where his trachea was connected to his stomach instead of his esophagus. He had surgery to repair this at one day of life. This is where the whole journey began. Benjamin was a healthy boy, but was born with alot of anamolies. Without his health, I don't think he would have survived everything including two surgeries and one infection in the first 4 weeks of life. He left the hospital after five weeks with a g-tube. He only used this g-tube for one month after coming home and now I really wish we would have fought putting it in. At that point in our minds it was the only way we would ever get him home. We started using the Haberman bottle at around 2 weeks old. He is now almost 2 1/2 and has come so far. He is walking, talking, running and doing summersaults. He is not able to completely close his mouth without assistance which he is learning to do on his own. It is so cute to watch him take his index finger and close his lips. This has prevented him from making the sounds B,P,M. He has therapy twice a week in our home seeing a occupational and speech therapist. He has strabismus, which he wears glasses to correct. He is able to move his eyes from side to side and up and down. This has improved greatly over the last year. He used to compensate by moving his head and still does this a little. He is not really able to blink. He does about an 1/16th to 1/8th of a blink, but most of the time rolls his eyes. When he sleeps his eyes usually stay open slightly. Up untill now we have had to deal with all his VACTERL issues. I'm not sure why I haven't found the moebius syndrome foundation and this group until now. Maybe we had to deal with everything else first. Ben has had four surgeries so far. Two of these include reconstructive surgeries on his hands. He was born with hypoplastic thumbs. This is common with VACTERL, but has anyone heard of this with Moebius? He had a pollicization surgery done six months ago where they removed his non- functional right thumb and turned his index finger into a thumb. Now he has a finger-thumb pinch. Before he used his index and middle finger to hold things. Last week he had reconstructive surgery on his left hand. His left thumb had minimal movement so they were able to transfer tendons. We are very excited to see the result of this surgery. His right hand has been so successful!!! Well, I'm sure there are many more things to write, but I need to go. Ben is my 5th of six children and they all need me. So glad to find this group!!! God bless, Dawna Rockey, mommy to Benjamin (2yrs) http://www.caringbridge.org/visit/benjaminrockey http://benjaminsbigadventure.blogspot.com/ *********** Clayton's Story This story was written by Clayton's mom Brittany: Clayton was born on february 14th, 2006 in Ft.Myers, FL. He was born almost 6 weeks early weighing only 4lbs, 4ozs and only 17 inches long. The first thing I noticed was his big beautiful, wide-opened blue eyes, but then my heart sank when I didn't see his face move, he was crying, but it just didn't look like it. But soon I was reassured that yes, he was crying and breathing on his own. They put him on some oxygen for maybe 6 hours just to be safe and put him in the NICU where they started all the tests... First they told me that they thought he had Down Syndrome due to his jaw and ears... I looked at him like he was crazy, because I knew that wasn't it. After the blood-work ruled that out, then a pediatric neurologist came in and examined him and at only 2 days old, he was diagnosed with Moebius Syndrome. After doing some researching about this disorder, I realized it just didn't matter, he would live a "normal" life and so what if he can't smile, he was still the cutest little boy I had ever seen! After about 19 days in the NICU, we finally found the right nipple (the pigeon feeder) that would allow us to take him home and feed him with a regular bottle, just a different nipple... they had said about a week before that that we could take him home with a feeding tube, but we said absolutely not, we worked with him until we both figured out how to feed him. Now, at 2 and 1/2 years old, he is finally walking on his own, but doesn't talk too much. He only has a couple phrases, but he is so smart! His receptive language is great and he does very well in speech, occupational and physical therapies. He never ceases to amaze us. He can laugh and cry, he can't smile but you can definitely tell if he's happy or sad. Recently at the Moebius Syndrome conference, he was evaluated and diagnosed with the Autism disorder... I'm not too sure what to believe on this one, because they based this on his social behavior at the conference, which he was very shy and nervous around new people, but i'm not sure what 2 year old doesn't portray that kind of behavior... who knows, only time will tell I suppose! All I know is that we love him with our hearts and he is the coolest little boy I have ever met =) Brittany ********** Matilyn's Story as told by her Mom Shelby It was a total surprise to us when my little angel, Matilyn, was born with webbed fingers. At least that's what we thought at first was wrong with her left hand. The Doctors rushed her out of the O.R.quickly to reserve her intestines that were protruding out of her abdominal wall. Matilyn was diagnosed with gastroschisis when I was only 12 weeks pregnant, during my first sonogram. I had a cesarean section to prevent the intestines from pulling anymore so when they yanked her out and showed her to Matthew, that's what he responded with."Shelby, she has a hand defect, they're webbed." Not knowing that there was no hand at all. We knew she'd be in NICU for a week or two but had no idea what the doctors would say to us scared, young new parents next. On day two of her life she had the surgery to put her insides back in place. As we sat there staring at this perfect innocent life, hooked to a ventilator, so drugged up she barely looked alive, this tall, stalky dark skinned man Dr. Perez came to tell us the most confusing thing I had ever heard. He told us in a thick Spanish accent, "Your child has a rare syndrome called Moebius. This means that she'll never smile and probably never have a normal life. She'll need a g-tube to eat for her." I think I was mostly shocked because I let him walk away without asking any questions except how to spell it. I was thinking about how wrong the doctor was for the next few days while watching my beautiful daughter not make any funny baby faces. Just still and doll like, or even frozen. I fought the doctors with the g-tube telling them that we can just squeeze her checks together to help her suction onto the bottle. The day that the doctor came in to ask my grandma what drugs I had done was the day that we finally told them that she's going home us and we don't care if they say no. I was determined to make this little girl grow without another surgery that would set her back in life. Today, Matilyn is so healthy and she does live a normal life. AND! She does smile. Luckily Moebius only affects the left side of her face so on the right there is a huge upright smile when she's happy. She's wearing a 4T and she's only three. :-) She talks clear and loves reading books, doing puzzles and watching Disney movies. If I could change her, I wouldn't. She wouldn't be Matilyn without Moebius and I probably wouldn't be me. I am glad of Moebius because I have the opportunity to educate people about something they have never heard or thought of. *************************************************************************