Jodi’s Story


Who is Nikolas Ortiz? 

Nikolas Ortiz was born in October of 2003. Nikolas is a fun, loving, thoughtful, and happy boy. He has a passion for life, basketball and hanging out with his cousins and friends. When Nikolas was just over a year old, he had what at the time was diagnosed as a “febrile” seizure. This seizure event was followed by two additional seizures by the age of 2. The fact that he had 3 seizures triggered a series of tests, which led to him being diagnosed with Generalized Epilepsy and initiated an anti-seizure medication plan. For a couple of years things were going well, so well, that his doctor suggested that we begin weaning him off of medications and suggested he had outgrown his Epilepsy. Things were going according to plan until April of 2008, and he had is first ever break-through grand-mal seizure while at school. Several tests were done and Nikolas was then put on a cocktail of anti-seizure drugs in hopes of getting the seizures under control. During this time Nikolas remained positive, upbeat and happy. 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 he has chosen to take on the challenge and does so with a positive attitude.

Now let’s move the clock forward 5 years to 2013. Déjà vu, we were again weaning Nikolas off his medicine because he had been seizure free 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 lasting around 20 minutes. For the next 3 weeks he had continued seizure activity and endured 5 ER visits and countless poking and prodding, but to no avail we couldn’t gain stability. It was finally determined that due to the “complexity” of his seizures we were being transferred to UCSF Children’s Hospital via ambulance. We were off to UCSF with a bag of clothes and the hope of finding answers or at least getting back some control! Testing began immediately and that initiated another reduction in medications, with the warning that things may get worse before they get better… not what we really wanted to hear. They immediately took him off 3 of the medications (5 when we got there) and Dr. Sullivan (UCSF) began a new treatment plan for a new diagnosis. The new treatment plan was working and within a day or two we could see Nik “returning.” His quality of life was back but with a new diagnosis. The whole experience was shocking to us because no one in our family had epilepsy. Furthermore, Dr. Sullivan stated that Nikolas’ chances of outgrowing this type of epilepsy were not real high, though possible. This was also hard to hear, however, we still hold onto that hope! After many tests and working with different medicines we found a good combination that for now is working for him. Again, through the many ER visits, blood test, EEG’s and hospital stays, Nikolas has never lost his passion for life and being the thoughtful, loving boy he has always been. We’ve always said, “He is much stronger than we ever wanted out 10 year old to be.”

Knowing how helpless we felt because we could not make this go away for him, we as his parents, are wanting to pay it forward for the many kids and families dealing with epilepsy that go through the constant worry of, “Is this the day my child will have their next seizure?” Epilepsy is the 3rd largest neurological disorder and 1 in 100 people have epilepsy and that 1 in 26 of us will have a seizure during our lifetime. Since Nikolas loves San Francisco and ironically, it was UCSF that took such great care of him, we wanted to raise money for the Northern California Epilepsy Foundation. Several family members and friends will be running the 2014 San Francisco Marathon July 27, 2014. San Francisco has always been a special place for Nikolas and the very challenging marathon course represents the many “challenges”, similar to the ups and downs of caring for an epileptic family member. Epilepsy often has a negative connotation and often contradicting messages, some people are debilitated by epilepsy and others go about unnoticed. We are fortunate that Nik’s has been controllable through medications and many people have no clue the he does indeed have Epilepsy, but this does not stop us from wanting to help Nik and others. We are looking to raise money for the school districts to provide permanent on site nurses for those who need medical attention.

Please help our family pay it forward and support “Run Run Run for Nikolas”. Run Run Run began when Nik was just a little guy and we took him out to support his aunt running the California International Marathon (CIM), as he saw her come up he cheered “Run Run Run” and so it was born. Join us and pay it forward!!

Thank you,

The Ortiz Family