What is Moebius Syndrome?
Moebius Syndrome is an extremely rare condition which typically affects the sixth and seventh cranial nerves. These nerves affect the face and eye muscles and cause facial paralysis. Characteristics of Moebius Syndrome include:
Impaired ability in infants to suck
Inability to follow objects with one's eye -- instead the child turns his/her head to follow
Lack of facial expression
Inability to smile
FRAME on Moebius Syndrome
Why did this happen?
Moebius Syndrome is caused by underdevelopment of facial nerves. Researchers believe that there is a genetic cause, but have not yet been able to identify it.
Will this happen to children I have in the future?
The chances are very small that other children will also be born with Moebius. However, there appears to be an increased incidence of Moebius in children of parents with Moebius.
What kinds of problems could my child have?
In addition to the physical characteristics common to Moebius, your child may have the following problems:
Delayed crawling and/or walking due to low muscle tone
Respiratory illnesses due to low muscle tone
Hearing problems caused by fluid in the ears
Limited movement of the tongue
Sensitivity to loud sounds
Sensitivity to bright light
Will my child need surgery?
Strabismus (crossed eyes) is usually correctable with surgery.
Nerve and muscle transfers have been successful in recent years in providing some ability to smile.
Though not surgical in nature, children often benefit from physical and speech therapy to improve their gross motor skills and coordination, and to gain better control of speaking and eating.
How do I get help for my child?
Your child should be treated by a qualified craniofacial medical team at a craniofacial center. Currently, FACES has information on many of these teams. This is by no means a comprehensive list of all the craniofacial teams. Please contact FACES for details.
Am I alone?
No! There are many families and organizations who will be glad to talk with you and help you with information and support. Don't forget books, videos, and websites. The listing below will get you started.
FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
We provide financial support for non-medical expenses to patients traveling to a craniofacial center for treatment. Eligibility is based on financial and medical need. Resources include newsletters, information about craniofacial conditions, and networking opportunities.
Many Faces of Moebius Syndrome
"To create a better tomorrow for ourselves and children through education and public awareness."
Facebook Community: www.facebook.com/pages/Many-Faces-of-Moebius-Syndrome/189215821115287
Moebius Syndrome Foundation
P. O. Box 147
Pilot Grove, MO 65276
Excellent Resource!! This network has a very informative newsletter and an address list of over 850 families who are willing to provide support. They have bi-yearly conferences and all of the most recent research developments and information.
Children with Facial Difference:
A Parent's Guide
Written by Hope Charkins, MSW. Order from Amazon.com if you cannot find it in your local bookstore. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children.
National Health Law Program
1444 I St., NW, Ste. 1105
Washington, DC 20005
Provides extensive information on health care law affecting families with children who have special health care needs.
Worldwide Moebius Syndrome Map
A map showing where people with Moebius Syndrome live. If you would like to add yourself, please do!