Olivia’s Story

We welcomed our daughter Olivia joyfully into this world on August 25, 2010. She appeared to be a happy, healthy newborn, and for two months, she was. On October 24, our lives were forever changed when our sweet girl began having seizures. The next day, we learned why. Olivia was diagnosed with Aicardi Syndrome, an extremely rare and random genetic mutation. Her brain did not form properly, and, in addition to other physical and developmental challenges, we were told to expect Olivia to have seizures every day. EVERY DAY. And—with rare exception—she has, for almost two years.

I cannot describe to you how helpless we feel as parents. All we can do is hold her and comfort her. It is likely these seizures are contributing to her lack of developmental progress. It is heartbreaking to know that her potential is being further limited by epilepsy. We have tried multiple medicines and a special ketogenic diet, all to no avail. The types of seizures Olivia has—Infantile Spasms—are notoriously difficult to control. They are also notoriously harsh on the child’s developmental progress.