AzariaSage.org

    Shortly after Azaria was born, she began having seizures. Azaria was rushed away from us and taken to NICU where they began loading her with Phenobarbital. We had no idea what was going on. We were absolutey devastated and confused. We couldn't believe this was happening to us and we felt as if we were in some kind of fog or terrible dream. Azaria was transfered by ambulance to Children's Hospital, 45 miles away in Madera, where she underwent many tests. It was then that a neurologist came and delivered a devastating blow. He told us our baby was missing the center part of her brain, the corpus callosum. More tests were done and after an exam by a pediatric opthomologist, we were told that our baby has Aicardi Syndrome.

    Aicardi Syndrome is an extremely rare genetic disorder (only 300-500 cases known worldwide). It is a genetic disorder but it is not hereditary. Each case is new and is considered a "spontaneous mutation". Aicardi Syndrome only affects girls and the three main identifiers are the absence of the corpus callosum, daily intractable seizures, and retinal lacunae (lesions) that are specific to the syndrome. Also, spinal abnormalities, developmental delays, microcephaly, and other brain abnormalities are some other affects of Aicardi Syndrome. The prognosis and life expectancy is grim, but varies with each case. Medical management of seizures and early intervention with various therapies is generally the treatment. As for Azaria's prognosis, we were told she may only live to be a year, ten years at the most. Doctors said she will never walk or talk, and may be blind. (She is considered legally blind).

    Shortly after bringing our daughter home we found the Aicardi Syndrome Foundation and their email group. This support group was the best thing for us. With the support and guidance of other parents, we have been able to get answers to questions that many doctors couldn't even answer. The parents in this group have become our extended family and we know we couldn't have made it through some of the toughest times without them. The first year for us was the hardest! We watched our baby have so many seizures everyday, go through so many tests, have so much blood drawn and taken in and out of the hospital and ER. We went from doctor to doctor looking for answers. As was said before, she was so well planned for, how could this happen?

    Azaria did go through a lot her first year, as did we, her family. For months, we did not see Azaria's smile. It was gone, probably due to all the medications she was on. We tried several different medications to stop the seizures. At one point, she was having 80-100 seizures a day. Azaria began having such severe seizures that we stopped taking her to the emergency room for each one and started treating her at home with emergency seizure control. We have learned much, and often the doctors ask us questions about Aicardi Syndrome!

    As Azaria's parents, we vowed to do anything and everything we can for her. We will always continue to research and find alternative methods of healing along with traditional medicine. One of the best things we feel she has is Cranial Sacral Therapy. Azaria's therapist, Carol, is one of the best and is simply amazing. We have seen such a change in Azaria since receiving CST. We have seen a decrease in seizures activity, and Azaria seems to exhibits much more clarity. Azaria will always receive CST, it is a priority even though our insurance considers it to be "alternative therapy" and will not cover it. She also gets daily physical and occupational therapy and is working on learning sign language.

    Azaria started the Ketogenic Diet in September 2004. We have seen a great reduction in her seizures however she still continues to have one-three seizures a day. The Ketogenic Diet is a very specific diet that must be carefully monitored and measured to every gram. Ketones must be checked daily, blood levels monthly. With the diet, Azaria takes two anti-convulsants, Zonegran and Vigabatrin. Vigabatrin (Sabril) is not Federally approved in the United States. We have to order it from a Canadian pharmacy and it is one more out of pocket expense that our insurance will not cover.

    With the continued love and support from family, friends, and even strangers, Azaria has done incredibly well. She has touched so many lives and is definitely here to teach us all how special life is. We feel so blessed and honored that she has picked us to be her parents and to share her special light that twinkles in her eye everyday. Azaria is a very happy little girl, despite all of her challenges, and we, as her parents, are so happy to have her in our lives.