This is Burgundy she is going to be 17 years old and doing pretty good right now. We found out she had Aicardi Syndrome when she was about 2 months old. We didn’t want to believe it so we took her to the Mayo Clinic for a second opinion. It was true and we spent about 1/2 of her first 4 years in the hospital and then for the next 4 not one hospital stay but we have a some down times again lately but I think things are going pretty good again now. Well about our Family. My name is Tammy I am Burgundy’s mom. Her dad’s name is Bernard. I have a 18 year old (Kilee) she is a half sister to Burgie, Then there is my 15 year old (Raylee) is is a full sister to Burgie and my 4 year old (Siennah)half sister. Then there is Bernie’s other daughter who is 13 years old (Danica)half sister. She has been on the ketogenic diet for many years. She has been on many meds throughout her life some include Keppra, Diastat, tegretol, topamax, Phenobarb, Zonegram, trileptol, ACTH, that is just a few. She had alot of troubles with her seizures and and one of our most recent strategies was the VNS implant which has not proven to help. She also just in the last 2 years received a feeding tube. Our worst moment would be when we were in the er for the seizures her doctor told me that she may go into a seizure and not come out of it. well the next week her fever was 104 and is went into a seizure for 9 hours. I was so scared. but when her fever broke she came out of it. This Girl is truly amazing. I know she has taught her whole family what it is like to love someone in a whole new way. We were told 16 years ago she may not live long and if she made it to 5 years we would be lucky well I must say that we have the most amazing luck to be 12 years more then lucky. 🙂