Some friends of ours have an 11 month old daughter Sloane who has Aicardi Syndrome. They have set up a website www.sloanepasher.com, to bring some awareness to their situation, Aicardi and to reach out to help support those in a similar situation.

Neil (Dad) has developed "A Father's Blog" which is helpful for Friend and Family to keep up to date with Sloane's Development, but also provide some laypersons insight as to the types of decisions/discussions they face. It is certainly hard for us to understand, but hopefully by posting here we can help achieve two things:

So you just found out your Child has Aicardi’s Syndrome?

Although you love your child, this may be a shocker for you and may or may not be unexpected. Things are going to seem, or even be, overwhelming for awhile. You are going to grieve. With all the new and sudden changes in your life (doctor’s appointment’s ect) there isn’t even a moment to let you breathe. There seems so much to do and you are not only unsure what is needed or what to ask for, you don’t even know where to start.