Aicardi Syndrome

Aicardi syndrome is a very rare genetic disorder that affects only girls. It is not inherited from the parents, ie, it is not something that comes from the mother or father. It is a mutation acquired by children during their formation in the womb, and no one can predict when it will happen.

The prognosis really is not very good. There is neurological development delay, motor development delay, many Aicardi-girls hardly walk or speak. Seizures are frequent, recurrent, persistent and difficult to control. In literature, the life expectancy of girls rarely passes adolescence. But we know many cases of girls who come up to the second and third decades of life.

What we have learned in our journey is that every child is unique, and that the Aicardi Syndrome is nothing more than a collection of symptoms. Is worth remembering that medical assistance with current therapies and techniques will often improve the quality of life of children. But for us Stella is not summarized by a diagnosis. She is still our little girl happy and warm, which multiplied the smiles and dreams of our family.

In the U.S. there is an Aicardi Foundation, which holds conferences every two years. The next is scheduled for 2014. There is also an American website (http://www.aicardisyndrome.org) where you can meet other families and share experiences.