My husband, Kyle, and I met in Salt Lake City while attending college. We quickly fell in love, married, and began building our life together. In 2017, our daughter Aurie was born, filling our hearts with joy. Two years later, in the fall of 2019, just before the world changed with COVID, we welcomed our second daughter, Andie, into our family.
From the very beginning, our daughters shared a special bond. Aurie was always eager to hold her baby sister, carefully trying to swaddle Andie and snuggle her while watching her favorite shows. Their love for each other was immediate and undeniable.
When Andie was four months old, we went in for her routine check-up. The doctor mentioned she was on the smaller side but perfectly healthy. The very next morning, Kyle got up early to care for Andie so I could sleep a bit longer. That morning, everything changed.
I was awakened by Kyle at my bedside, holding Andie. “Lexie! I’m not sure what’s happening, but Andie is acting strange. Will you look at her?” he said. At first, I didn’t understand, but soon I saw it: our baby’s left arm and leg were rhythmically jerking, her eyes wide and staring upward.
Terrified and unsure, we Facetimed my mom, a pediatric nurse. She quickly recognized that Andie was having a seizure and asked how long it had been going on. When we said three minutes, she said firmly, “Call 911.”
By the time EMS arrived, Andie had stopped convulsing. The paramedics assumed it might be a febrile seizure, common in small children. But we noticed something alarming—her left arm and leg were completely limp. When I asked what to do, they told us to call her doctor. The pediatrician, however, insisted we go straight to the emergency room.
At the children’s hospital, something felt wrong. I called for help, and a team of doctors and nurses rushed in. We learned that Andie had not actually stopped seizing—her seizures had continued, just without the convulsions we expected. After an hour, the doctors finally managed to stop the seizure.
Tests and scans followed, and our world shifted completely. Andie was diagnosed with Dravet Syndrome, a rare genetic disorder that causes frequent, prolonged seizures that are notoriously difficult to treat. But seizures were only part of it. Children with Dravet often struggle to eat, sleep, and walk, and many require therapies for developmental and learning challenges. We learned that one in five children with Dravet does not survive into adulthood.
In an instant, the future we had envisioned for our family shattered. The months that followed were filled with seizures, hospitalizations, failed medications, and endless procedures. Andie’s longest seizure lasted over five hours. We’ve seen our tiny baby sedated, intubated, and even transported by helicopter. She has endured more in her short life than most adults could imagine.
Living in the Rocky Mountains was beautiful, but we couldn’t remain there. The nearest Dravet specialist was over 350 miles away. So, we moved to Houston, Texas—where I grew up, where my parents still live, and where Andie could receive care at a world-renowned medical center.
We quickly realized that seizures are not always what you see in movies. Andie’s first seizure was hemiclonic, affecting one side of her body with rhythmic jerking. She also experiences myoclonic seizures, brief episodes where her head drops for a moment, and absence seizures, where she stares into space, eyebrows and lips trembling. Each seizure is unpredictable, often happening while Kyle is at work.
In the early days, I panicked during seizures. My hands would shake, tears would flow, and Aurie, watching, would become anxious too. I realized I had to be strong—not just for Andie, but for Aurie. I began calmly explaining what was happening, giving Aurie small tasks during seizures: fetch a pillow, a blanket, or a stuffed animal for her sister. We also created a safe space for Aurie if she didn’t want to watch. These strategies helped her feel empowered rather than scared.
The past year has been a whirlwind. Andie’s days are filled with therapy to help her walk, eat, communicate, sleep, and manage her seizures. During hospital stays, only Kyle and I were allowed to be with her due to pandemic restrictions, often leaving Aurie at home, worried and asking in her sweet toddler voice, “Why Andie have seizures?”
I searched for picture books that could explain epilepsy to a preschooler but found nothing simple enough. So, I decided to create one myself. Over seven months, I wrote and illustrated Andie and the Storm: A Book About Epilepsy. The book is short, rhyming, fun to read aloud, and explains seizures in a way young children can understand. The illustrations feature my daughters, and the linework can be colored by children themselves.
The first time Aurie saw the book, her eyes lit up. “So cute! Read it to me! It’s so awesome! Look! Andie and the Storm!” she exclaimed. We’ve read it every night since. When asked what a seizure is, Aurie confidently replies: “It’s like a storm.” Her curiosity and understanding bring me so much joy.
Amid the chaos, we’ve found silver linings: lasting friendships, an outpouring of community support, and the resilience of our girls. Andie continues to progress with the help of therapies and medications, though finding the right combination remains a challenge. We remain hopeful, with new treatments on the horizon and the dream of a cure someday.
Andie’s journey has taught me the fragility of life and the power of presence. I hope our story inspires others—families affected by epilepsy are not alone. We cherish every moment, every smile, every tiny victory, and we do our best to live fully, right here, right now.
