Published on November 16, 2023, 12:49 am
Amelia Lavenski, a 4-year-old girl from Anne Arundel County, Maryland, has faced numerous challenges in her young life. Diagnosed with epilepsy at just 15 months old, Amelia experiences seizures caused by a rare gene mutation known as mitochondrial disorder.
For years, Amelia’s family witnessed her struggle with one or two seizures annually, requiring hospitalization each time. However, in August 2023, a particularly severe seizure changed the course of Amelia’s life. She was immediately rushed to the emergency room and admitted to the Johns Hopkins Children’s Center Pediatric Intensive Care Unit (PICU).
Despite administering medication to control the seizure, it persisted for an agonizing week. To prevent further complications, doctors intubated Amelia and closely monitored her brain activity using an electroencephalogram (EEG). Eventually, after adjustments to her medication and implementation of the ketogenic diet – a high-fat, low-carb diet known to help manage seizures – Amelia’s condition began to improve.
Unfortunately, the prolonged seizure had already caused inflammation in her brain and led to severe complications. For weeks after being discharged from PICU, Amelia remained unable to walk or move one side of her body independently. She required extensive care and rehabilitation at the Kennedy Krieger Institute.
Amidst these challenges, Amelia persevered. She gradually regained motor skills through at-home therapy and outpatient sessions. As she relearned how to walk and develop other social and motor skills, Amelia made significant progress. Her doctors remain optimistic about her continued recovery.
The ketogenic diet played a vital role in saving Amelia’s life by helping to control her seizures when traditional medications alone were insufficient. According to Dr. Eric Kossoff, director of pediatric neurology and the Ketogenic Diet Center at Johns Hopkins Children’s Center, although not everyone benefits from this diet approach, it proved lifesaving for Amelia.
As November marks National Epilepsy Awareness Month, this serves as a reminder of the challenges faced by individuals with epilepsy. It’s crucial to raise awareness about this common neurological disorder, its symptoms, and available treatment options.
Amelia’s story underscores the importance of continued research and advancements in epilepsy care. With ongoing support from her family and medical team, Amelia is making remarkable strides toward a brighter future.