Meet Eva
2026 Update
Now 9 years old, Eva lives in Birmingham, AL with her mom, dad, two older sisters, and two goldendoodles. Over the past few years, she has experienced significant changes, including moving from Texas to Alabama, adjusting to a new school, and trying out new medications and therapies. In the spring of 2024, we made the decision to move forward with the Vagus Nerve Stimulation (VNS) procedure in hopes that it would help with Eva’s seizures. In the beginning, there were no significant changes, and her seizure occurrences remained the same. But over time, as the device's electrical impulses gradually increased, there was evidence of improvement in her seizure activity.
Although the VNS device offered benefits, Eva still experienced 3-4 seizures monthly. She suffered a particularly severe seizure lasting close to an hour in late 2024 that led to another hospitalization and intubation, requiring several medications before it finally stopped. After a challenging recovery, her neurologist suggested adding another medication, Onfi, to her daily routine. She now takes five medications daily, which have controlled Eva's seizures effectively over the past six months of 2025. What a blessing!
Eva has the spirit of a true princess—determined, fiercely independent, energetic, witty, clever, and sassy! Most days, she claims her throne (the couch), holding a tablet in one hand and a princess doll in the other, confidently delegating tasks to family members. While some of us are more eager to help than others, Eva’s two older sisters don’t always find her requests as charming as they once did. Still, after hearing the same request for the tenth time, they usually give in and bring her whatever she wants. Eva in turn is satisfied; therefore, her kingdom (our family) is satisfied.
Eva’s journey over the past year has been marked by both progress and continued resilience, despite ongoing challenges associated with Dravet syndrome. Every prayer, donation, and act of support from friends, family, and the community has lifted us through some of our most difficult moments. The encouragement we receive reminds us that we’re not alone. Each gesture fuels our hope and determination, helping us to face the ongoing challenges of Dravet syndrome and celebrate Eva’s progress. With every step forward, we’re deeply grateful for the compassion that surrounds our family and strengthens us for whatever comes next. We invite you to support our ongoing mission to find a cure for Eva and others like her living with Dravet.
2023 Story
Eva’s experience with seizures began when she was just 8 months old during a family vacation in Destin, FL. Eva awoke from a nap shaking, jerking, and struggling to breathe. We hadn't anticipated a seizure, but with quick family action, we took her to the closet urgent care. There, doctors identified that Eva was in fact having a seizure and immediately sent us by ambulance to the hospital in Fort Walton, FL. There, Eva was intubated and the medical team worked tirelessly to stop the seizure. The ordeal was unlike anything we had ever encountered. The doctors ordered multiple tests to see if anything abnormal came back, but at the time there really wasn’t anything that showed why she had a seizure. We wrote it off as a febrile seizure from an illness and after several days in the hospital, Eva was finally discharged and we returned to our home in Texas. Our family was extremely exhausted, but we hoped the worst was over. Unfortunately, like many families affected by Dravet syndrome, we were unaware of the challenges ahead.
Just seven days later, Eva experienced another 45-minute seizure that would not stop on its own. This time, she was taken by ambulance to the Children’s hospital in Dallas, TX and required an extended stay of more than a week. Still so many of our questions could not be answered. Before we left, the neurology team told us to start Eva on the medication Keppra. Unfortunately, the remainder of 2017 was marked by frequent hospital visits as Eva’s seizures persisted. Soon we were up to 3 medications daily to help control the seizures.
Finally in 2018, when she was 18 months old, Eva was diagnosed with Dravet syndrome, a rare and severe form of epilepsy caused by a mutation in the SCN1A gene. Receiving this diagnosis was overwhelming for our entire family. We found it difficult to accept the initial diagnosis and feared for the unknown future.
Despite the challenges that Dravet syndrome brings, we refuse to let it define her. Eva is an energetic and joyful 6 ½-year-old who enjoys playing with her two older sisters Elise and Ellyn. She loves spending time in the bathtub, attending church, and visiting her teachers and friends at school. Certain factors, such as excessive activity, excitement, overstimulation, lack of sleep, and illness, can trigger her seizures. Eva faces developmental and cognitive delays, but she continues to meet milestones and amazes us with her achievements.
Adapting to life with Dravet syndrome has been challenging for our family. But having a strong support network, including connections with The Dravet Syndrome Foundation, has made a significant difference. This organization provides a sense of community and resources, raising awareness, and funding research for better treatments. Until a cure is found, we remain committed to advocating for Eva and other individuals with Dravet.