Faith Richelle Salas

Our journey to this point mirrors many of the other stories on the meet some of us page. We found out something was not right at about 22 weeks pregnant. Our sonogram showed cysts on the brain, and from then on I was closely monitored. When Faith was born we were overjoyed, she looked healthy and hairy! We had her first MRI at two weeks where we learned she had agenisis of the Corpus Collosum (missing a part of her brain) but were told not to worry. Development was normal and shortly after her first immunizations, the seizures began. And came fast and hard. We spent the holidays in the hospital,were told she would not make it to see one, no one would could give us an answer.
Finally, we traveled to Houston and after an eye exam she was diagnosed with Aicardi Syndrome, which explained the inability to control her seizures, why meds were not working, and that we had done nothing wrong.
That day we thought we had lost everything. She no longer smiled, stopped developing normally, and we were devastated. The doctor gave us a card to this website and said, your lives are about to change. Goodbye.
Two years later, we continue to be blessed with our darling Faith and recently celebrated her second birthday with a bettter understanding and acceptance of her syndrome. We still obviously have worries but they don’t take over our days any more. No longer are we lost, and sad (although some days are harder than others)we cherish every moment and live for the now. She defeats odds every single day that she wakes up.
Our family is very lucky to have a wonderful support system of family and friends who love us and her unconditionally. They help remind us that we are the same people, with a different life, but who cares! We also have an excellent extended family through the yahoo Aicardi listerve that has been vital through many tough days and has given us the answers to many questions that some took some doctors months to figure out!I encourage new families to join and also make plans to attend the next conference.
Faith currently still has daily seizures, but she is happy and content. We stopped traveling to Houston for medical treatment and she is seeing a wonderful nuerologist and pediatrician in San Antonio. She had the Vagal Nerve Stimulator (VNS) implanted in November of 2010 and we are still doing setting adjustments. She is also on Topamax, Keppra, and two sleep meds. We are hoping to get to only one antiepileptic med along with the VNS, but her seizures are always evolving so it’s a work in progress. We are more concerned with quality of life for her versus obsessing on a cure. Which is non-existent at this point.If she’s happy then so are we!
Although we’re not sure how much she sees, we know she loves to be snuggled, cuddled, and carried excessively! She gets her toe nails painted every other week, loves Dora the Explorer, being the princess at home, her pacifier, all the guys in her life, and sometimes her new pitbull- Rosko.
She has a big personality, although she doesn’t talk we definitely know when she’s happy, sad, upset, or when her therapists come over because she always seems to fall asleep.
Our family loves differently and takes no moment for granted because of her. She along with all our children are a constant blessing.
love and hugs!
Rivera-Salas Family
San Antonio, Texas