"If there's anything we can do..." is a phrase we often hear from well-meaning friends and family. Is there anything you can do? Yes, there is.
1) Learn about Sadie and her condition. http://www.aicardisyndrome.org/
2) Don't be afraid to talk about it. Her condition consumes our life. Ask questions. Don't worry about saying the wrong thing.
3) Pray. I still believe in the power of prayer. While I don't think it will make Sadie's condition go away, I can't help but hope that these prayers will help her reach her greatest potential.
4) Listen. It may not always be easy to hear about Sadie's seizure meds or her latest challenge, but it is helpful for us to discuss it.
5) Give money. Not to us - to the Aicardi Syndrome Foundation. (http://www.aicardisyndrome.org/). The foundation sponsors a bi-annual conference for families affected by Aicardi. They also provide great support for reseach into the Syndrome. If you're looking for a great cause, and have a marathon, 5k, cocktail party, Friday night, etc., please consider turning it into a fundraiser for the Foundation.