Aicardi Syndrome Moms West Coast Weekend

Aicardi syndrome is a rare genetic disorder identified by the French Neurologist, Dr. Jean Aicardi in 1965. The number of identified cases of children with Aicardi syndrome is very difficult to calculate accurately. Several hundred have been reported on in the literature, and one study estimates at least 800 cases in the US, and several thousand worldwide.
Aicardi syndrome is characterized by the following "markers":

1. Absence of the corpus callosum, either partial or complete (the corpus callosum is the part of the brain which sits between the right and left sides of the brain and allows the right side to communicate with the left.)

2. Infantile spasms (a form of seizures)

3. Lesions or "lacunae" of the retina of the eye that are very specific to this disorder

4. Other types of defects of the brain such as microcephaly, (small brain); enlarged ventricles; or porencephalic cysts (a gap in the brain where there should be healthy brain tissue)

My name is Sara and my daughter Nicole (16yo) has Aicardi Syndrome. My friend Fran's daughter Lilly (5yo) also has Aicardi Syndrome. We have decided to put together a special weekend for other Aicardi Moms in San Diego this coming June 21-24. We would love to be able to raise enough money to pay for at least one dinner out to a nice restaurant for the entire group. It would be AWESOME if we could raise enough for dinner for the group for all three nights!!!  We are expecting about 17 moms to be in attendance for our weekend getaway. We hope to have a fun weekend of visiting with each other, relaxing, and sight seeing. Since Aicardi Syndrome is SO rare it is not often that fellow Aicardi Moms can get together in person because we are so wide spread across the US and the world! Even though we are separated by many miles we are all so close and tight knit as a special family. When we do have the opportunity to meet in person it is as if we are meeting a long time friend who can relate to our struggles, frustrations, and victories!  When one of the girls get sick we still feel so very supported loved and prayed for by women who know how this feels:who can understand. You never feel alone even when you are sitting in the hospital by yourself holding your sick child's hand by your lonesome. We consider our girls to be sisters and we celebrate as each one achieves a goal, big or small, and we cry and pray for those that are sick or hurting. Aicardi families really do have a special bond and it is so nice to know that we are not alone in this journey. We plan on making this a biannual event but it may be a once in a lifetime event for many of the moms. Due to the demands of caring for an Aicardi girl it can be very difficult to find time to get away as any parent of a special needs child knows. 

The picture at the top of the page is a small part of a large group of Aicardi girls that gathered in St. Louis, Missouri last summer for the biannual Aicardi Syndrome Family Conference. The conference is generously funded by the aicardi Syndrome Foundation. Our weekend getaway is NOT funded in anyway by the foundation. They are very supportive of our event but it is up to the moms attending to pay the cost. We hope that the donations received though this site will ease some of the expense for those that attend. Thank you very much for your generosity!!!!