Sophia’s Story

Hello! My name is Sophia and I have had epilepsy for most of my life. I began having seizures when I was approximately 2 years old.

Though my parents didn’t know it yet, my constant head drops were in fact seizures. 

At three years old, in the middle of the night, I experienced my first serious tonic clonic seizure. My mom found me pale and unresponsive. My family called the paramedics, and they were able to to stabilize me and rush me to the hospital. We followed up with the neurologist and that’s when my journey began.

I was having a variety of seizure types including atonic, tonic clonic, focal unaware and absence seizures.

Long hospital stays and EEGs followed, along with an assortment of anti-seizure medications. Some of which showed promise, and others with serious side effects.

At three years old, the neurology team determined that the seizure activity could not be pinpointed to a specific generator, and suggested a procedure called a Corpus Callosotomy. This involved essentially separating the two halves of my brain to limit the electrical activity from spreading between the hemispheres. With all the activity I was having, it was affecting my quality of life and my parents had to make the extremely difficult decision to move forward with the procedure.

The surgery was successful enough to allow the seizures to be controlled medically, but left me with right side weakness that required rehab, and that I continue to deal with today.

I was practically seizure free with medications until the age of 19. That’s when I began experiencing focal aware seizures. 

The subsequent MRI revealed a small lesion on the left side of my brain that we’ve been monitoring ever since.  

As upsetting as it has been with this new diagnosis and the return of the seizure activity, I am optimistic that with the many new medications and advancements in procedures in regards to epilepsy, that I will one day be seizure free.

Kind words you would like to share with a parent or someone newly diagnosed:
To a parent of a child with epilepsy or if you, yourself are newly diagnosed I want you to know that you’re not alone and it’s ok to feel scared or lost. You will get through this. Each day might come with its own challenges, but you face it with courage and resilience.
Don’t allow Epilepsy to define you, Stay Strong.

Connect with Sophia:
Instagram: @x_sophierosie_x