What is Moebius syndrome ?

The Moebius Syndrome, is very rare. Many doctors, also, have never heard of it.

It is estimated that Brazil has 600 cases and in United States the cases amount to 1,000.

Moebius syndrome is characterized by peripheral facial paralysis, in general laterally, paralysis of the VI pair, atrophy of tongue muscle and other muscular and bone anomalies, more frequently located in distal parts of superior and inferior extremities

The facial alterations that Moebius-affected children make them have an inexpressive aspect, without any facial movements, so that demonstrations of happiness, sadness, pain and other emotions are only made possible to detect through sound. They also keep their mouths half open and with the attempt of closing their eyes, an non-esthetic marked aspect appears with the Bell sign.

All expression alterations and physical deformations related to them certainly cause emotional disturbances which may be confused with a certain degree of mental illness which, in fact, they do not have.

If there is a wrong diagnosis, these patients undergo misconducted psychological treatments.

Main characteristics of Moebius syndrome:

  • deformation or even atrophy of limbs (bend feet, absence of toes or fingers);
  • partial or generalized paralysis of nerves on the face. Thus, the child does not blink, tear;
  • Does not chew, blow, speak properly and mainly does not smile or show any facial expressions;
  • strabismus.

No cases are know which characterize that the brain has been affected. They are mentally perfect and extremely intelligent children.

The treatment includes corrective surgery (orthopedics and strabismus) rehabilitation and mainly dedication and stimulus

Recently a pioneer surgery has been performed (in the case of Moebius) of implant of nerves on the face of the girl Chelsey Thomas at the Kaiser Permanent Hospital, Los Angeles, CA, U.S.A

So, we need help to collect funds and create conditions so that these children, together with their parents, can be oriented and have proper follow-up.