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Jordan’s Story

My name is Jordan, and my five year old daughter Teagan was diagnosed with epilepsy when she was 18 months old. Teagan has always been so full of life, and everyone who meets her is guaranteed to never forget her. Her sense of humor is unmatched, she is so incredibly smart, and truly the most beautiful soul that my heart has ever had the honor to know and love. Her seizures were initially only febrile, and her pediatrician at the time told us not to worry and that this is “normal.” She scheduled an EEG for my daughter just to calm our nerves, but unfortunately the appointment was made 6 months from her third seizure in February of 2018. Unfortunately, about 2 months after her first seizure, her first unprovoked grand mal came without any warning. This episode lasted for over 30 minutes, and although I have witnessed many traumatic things in my life, April 5, 2018 still secures the top 3 spot for the most terrifying. After our first 3 day VEEG, multiple blood tests, and sleepless nights alone in a hospital bed with my warrior, we finally received a diagnosis: generalized epilepsy. At first I didn’t know how to handle this news, not even in the slightest. That gut wrenching feeling, the raw grief that you feel when you realize that the “normal” life you had planned and expected for yourself and your child is ripped away from you before you can process it, has still to this day been one of the worst things I have ever felt. Her seizures changed before we could figure out how to handle what we were already given – they went from strictly tonic clonic to simple focal, simple and complex partial, and myoclonic. She couldn’t go more than a day or two without having at least 2-3 seizures for months. She was having so many seizures at one point that she couldn’t walk, stand, or even sit on her own. She has tried over 13 medications and combinations, steroid therapy which essentially tore her veins apart, every scan you could imagine, spinal taps, and countless blood draws.

After a while we figured out that she had a focal cortical dysplasia, which the doctors initially thought was the source of her seizures. We unfortunately discovered after later scans that her seizure origination sites had spread. We discussed brain surgery, VNS therapy, invasive EEG, keto, further steroid treatment, and even “black box” labeled medications that genuinely terrified me. I couldn’t even try to guess how many ambulance rides we’ve taken, how many nights we’ve stayed in that cold and lonely hospital room, how many times I’ve absolutely lost it and borderline went insane because of the hopelessness I’ve felt. I have stopped breathing when her face turns blue, my lungs refusing to take in oxygen unless she did. I have screamed and cried alone in my car, literally to anyone or anything that could hear my cry for help, only to get myself as together as I could so that I could return to the hospital – we couldn’t both be scared at the same time. There have been times I wanted to scream at the top of my lungs at the doctors and nurses who I knew deep down were genuinely trying to help, but in the eyes of an angry and terrified mother, everyone who doesn’t “fix” your child is the enemy.

Despite every setback, challenge, and all the adversity we have faced, I am proud to say that Teagan has been 7 months seizure free (not counting a breakthrough seizure she had in June due to fever.) This is something I silently celebrate every day (I don’t want to jinx it,) because I genuinely didn’t know if this goal would ever be reached. She has shown and taught me patience, unwavering strength, and the ability to see the world as a beautiful and magical place despite the scary parts. I have met so many beautiful people throughout this journey and have been so thankful to have been able to become an advocate with the Epilepsy Foundation of Texas. Great things are being done every single day in the advancement of epilepsy research, but we all need to push harder, speak louder, raise awareness, and advocate for those who suffer from this condition until the right breakthroughs are finally made. I believe this is crucial to the well-being of not only children like my daughter, but every single warrior out there that perseveres despite the uncertainty. We will find a cure for epilepsy, and I will fight for it until my last breath. For everyone fighting epilepsy and everyone who loves someone with epilepsy – I hear you, I see you, and I love each and every one of you.