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:
1.) Create awareness of some of the great things he is publishing so those more familiar with what they are going through can become part of the conversation and;
2.) Create some awareness of the site and the things that he is publishing so that those are learning of a similar diagnosis have an additional resource and or family to communicate with and reach out to for support.
I encourage you to vist and weigh in on the conversation on one blog post in particular that I found incredibly difficult to relate to. http://www.sloanepasher.com/SP/A_Fathers_Blog/Entries/2011/2/1_Quality_vs._Quantity.html
Regards,
Bryan