Olivia Rose was born in October 2006. A sweet, precious daughter who captured our hearts. The little girl we dreamed of. Liv met all her milestones and was a typically developing baby. However, our perfect world was turned upside down the morning of January 9, 2008. At the age of 15 months, after receiving routine vaccinations less than 24 hours prior, Olivia started seizing in my arms. After a haunting and frantic call to 911, Olivia was hospitalized. She remained in the hospital for 10 days undergoing a multitude of tests and stumping all of the doctors and specialists. Olivia had upwards of 100 seizures during this period. During this time, Liv lost all of her skills. She was unable to walk, talk, feed herself/eat food, play, hear, smile, communicate in any way. Within a month, Olivia regained her ability to walk and hear, and she began to communicate using baby signs and words again. She started speech therapy and we continued to have her tested and monitored by our pediatric neurologist as well as other well respected specialists. It was finally determined that Olivia’s seizures were controlled. Together with her doctors we decided to wean Olivia off seizure medications with the belief that the seizures were vaccine-induced. So, in mid-March of 2008, the nightmare was over and we had our sweet Olivia back again.
Our world came crashing down again in May 2008 when Olivia had a low-grade fever and began to seize again. This time we weren’t as lucky. The seizures were relentless and she suffered hundreds over a short period of time. We tried everything to stop the status state she was in. And like before, our little girl lost everything. This episode proved to be far worse. When Olivia finally stopped seizing and started to “recover”, the process was extremely slow. She took over a month to learn to walk again. She lost all of her language for several months. She didn’t smile or laugh. Olivia didn’t recognize us (her parents). It was the most devastating, heart wrenching experience of a parent’s life. We had again lost the child we knew. She was gone. Literally.
Olivia slowly began to regain her skills and relearn some new skills. In September 2008, Liv had “recovered” in many ways and her seizures were controlled with medication. But Liv was no longer the “typical” kid we thought she was as an infant and early toddler. At this point, Olivia was receiving occupational, physical, and speech therapy. Olivia was also assessed at the MIND Institute. On the day of the assessment, she made no eye contact, did not smile, did not hold toys or play with them appropriately, and had little to no communication. She was diagnosed on the Autism spectrum, with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified). As a result of her PDD diagnosis, Olivia started and continues to receive intensive ABA (Applied Behavioral Analysis), as well as speech and OT.
At the age of 3, we received the PCDH19 diagnosis. Neither my husband or I are carriers of the mutation and we were shocked but oddly relieved to finally have an “answer”. With the diagnosis, we were finally able to accept that Olivia was probably not going to “recover” or catch-up. This was a difficult realization for our family. Olivia has many delays, particularly with respect to her social and verbal development. She continues to have seizure episodes about every 3 months or so, and is on 2 anti-convulsants.
Olivia is currently a sweet, active, happy 6 year old. She is learning to read, write, count and spell in a typical first grade classroom with the assistance of a one-on-one support paraeducator. She adores her older and younger brothers and spending time with the entire family. She enjoys playing on her iPad, swimming, riding bikes, playing on the bars, and playing board games. Olivia is the strongest, most determined, resilient little girls I know. She works and plays hard and she loves life to the fullest. Olivia is a fighter and she never ceases to amaze us.