#Run, Run, Run for Nikolas

Nikolas is a fun, loving, thoughtful, goofy and happy young man. He has a passion for life, his friends and family. When Nikolas was just over a year old, he had what at the time been diagnosed as a “Febrile” seizure. This seizure event was followed by two additional seizures by the age of two. All of this led to him being diagnosed with Generalized Epilepsy and initiated an anti-seizure medication plan. For a couple of years things his Epilepsy was held in check through medications and his doctor suggested that we begin weaning Nikolas off of them to see if Nikolas had outgrown his Epilepsy. Things were going according to plan until April of 2008, and Nikolas had his first ever break-through grand-mal seizure while at school. Following this traumatic event several tests were done and Nikolas was then put on a cocktail of anti-seizure drugs in hopes and successfully getting the seizures under control. During this time Nikolas remained positive, upbeat and happy.

Let’s move the clock forward five years to 2013, and Nikolas was doing well on his medications. His doctor suggested we start weaning Nikolas again because he had been seizure free for more than two years and the doctors thought it would be a good time to see if Nikolas outgrew the epilepsy. However, on July 24, 2013, Nikolas had another grand-mal seizure. For the next three weeks he had continued seizure activity and endured five ER visits, but this time we couldn’t gain stability. It was finally determined that due to the “complexity” of his seizures Nikolas should be transferred to UCSF Children’s Hospital. In the darkness of night, we were off to UCSF in an ambulance with a bag of clothes, hope and a lot of prayers!  Once at UCSF testing began immediately and that initiated another reduction in medications, with the warning that things may get worse before they get better.  We were introduced to Dr. Joseph Sullivan who along with his team of Epileptologists began a new treatment plan and a new diagnosis. The new treatment plan was worked almost immediately, but time would tell. His quality of life was coming back but with a new diagnosis. The whole experience was shocking to us because no one in our family had epilepsy.  Further it was stated that Nikolas’s chances of outgrowing this type epilepsy was not possible, but we still continue to have hope.  This was very hard to hear.  We’ve always said, “Nikolas is much stronger than we ever wanted our son to be.”  We have always told Nikolas that he has epilepsy, but epilepsy does not have him. We are not sure if he quite understands what that means, but Nikolas surely lives his life that way and with a positive attitude. 

It was around 2006, when Nikolas’s aunt Voni ran her first marathon in Sacramento (California International Marathon) and while cheering for her on the course, he yelled out “Run, Run, Run” .. And so it was born!  In 2008, after Nikolas’s break through seizure, my family ran the CIM in his honor to raise awareness and funds for the Epilepsy Foundation, and so did the dream of having epilepsy run.  In 2014, we ran our second marathon, the San Francisco Marathon, with the same dream of having a run for the Epilepsy Foundation. We chose San Francisco because of how fantastic UCSF was and it’s Nikolas’s favorite place to visit, Pier 39 and the Sea Lions after his doctor’s appointments are a must! The challenging marathon course represented the many “challenges”, similar to the ups and downs of caring for an epileptic family member.  Epilepsy often has a negative connotation, and some people are debilitated by epilepsy and others go about unnoticed. We are fortunate that Nik’s has been controllable through medications, but this does not stop us from wanting to help Nikolas and others.  

Knowing how helpless we felt because we could not “fix” this or make this go away for him, we as his parents, have been wanting to pay it forward for the many kids, adults and families dealing with Epilepsy that go through the constant worry of, "Is this the day I will have another seizure?" Epilepsy is the 4th largest neurological disorder and 1 in 100 people have epilepsy and that 1 in 26 of us will have a seizure during our lifetime. 

They say timing is everything and we have a great team that wants to pay it forward and Run, Run, Run.  Please help our family and team to pay it forward and support Nikolas and others who have Epilepsy.  Seize the Moment and let’s not lose another moment to a Seizure. 

Thank you, 

The Ortiz Family 

#Run, Run, Run for Nikolas