Your child has an abnormality of the brain that is incompatible with life. Parents of children with Joubert Syndrome have been given such a bleak prognosis. Imagine the devastation they have felt. Joubert Syndrome is a rare genetic condition characterized by absence or malformation of a part of the brain that controls coordination and balance. Infants display low muscle tone and irregular breathing patterns.
Development is delayed and speech is difficult or absent.
In January 1992 three mothers decided to tackle the impossible. In Touch Network was born. Now six years later we have located over 200 families worldwide. We have pooled more information than was ever previously compiled and proven that while our children face many significant challenges, They have defied bleak predictions. Our children are no longer written off as having a terminal condition.