In Honor of Freddy Joseph Hernandez

A Note from Freddy's Mama:

Why I do what I do—for those that did not have the amazing privilege to know Freddy, here is a little back story as to why I will celebrate him every year by raising epilepsy awareness! He lives on through us. Don’t let anyone or anything dictate how to live your life!

Freddy Joseph Hernandez loved life. He had an infectious laugh and was known best for his giving, loyal and kind personality. He was the person everyone could call if they had a bad day to get support, hugs or a good laugh. After graduating high school, Freddy decided he wanted to work towards a career as a skilled welder and one day own his own business. He was extremely artistic and creative and wanted to create unique designs for custom homes.

One day, when Freddy was 19, he experienced what we thought was just a fainting spell. About 9 months later, we would come to witness a grand mal seizure- that day changed all of our lives forever. The next 5 years were spent at endless doctor’s appointments and emergency room visits where he was provided various medications and underwent a multitude of tests. “It is just a genetic anomaly” is what they said. As a mother, I was not happy with the lack of diagnosis or attention that was being provided by his medical care team. I was new to this, but did everything I could- crying, yelling, writing letters – doing everything I could to get our insurance to approve a referral to Stanford's Neurology Team.

Finally, after a couple years, it happened. As he began his testing and treatment there, it was discovered he was over-medicated. The adjustments to medication started again, along with the horrible side effects that go with it. However , we then had hope we would get a better diagnosis. After just a few months, Freddy experienced what we have been told was SUDEP- Sudden Unexplained Death by Epilepsy. We lost this wonderful, strong soul just 5 days before his 26th birthday in June 2016.

For Freddy, he never had a bad outlook on life, nor let the fear of having a seizure change his personality. For him, the biggest burden was his inability to work. Losing your driver’s license at 19, for a young man is hard to accept. His freedom and independence being taken away and dictated by not only his condition, but the medications he was provided to “help” control the seizures. He forged ahead, made a sharp turn in his career path. Freddy was more of a physical learner, school was not his favorite, however he enrolled and completed Pharmacy Tech school and was proud to start looking for an internship. We were all enormously proud of him.

For me, the most frustrating part was the fight. The fight to learn and educate myself on the medical system. What was epilepsy? What caused seizures? Who could help me to help my son? How to get the care and treatment he needed. Although the loss has been tremendous, and it has taken me a few years to come out of the darkness, I vow to do what I can to spread awareness about epilepsy. To fight for others as I know Freddy would do himself if he had the opportunity.

Love,
Freddy's Mama