Published on November 15, 2023, 12:46 am
Amelia Lavenski, a 4-year-old girl from Anne Arundel County, Maryland, has captured the hearts of those around her with her bright personality and infectious laughter. But behind her radiant smile lies a challenging journey that began when she was diagnosed with epilepsy at just 15 months old.
Epilepsy is a neurological condition that causes seizures, and Amelia’s case is further complicated by a rare gene mutation called mitochondrial disorder. This genetic abnormality leads to prolonged seizures, resulting in frequent hospitalizations for Amelia. However, it was an uncontrollable seizure in August 2023 that changed everything for her.
During this life-changing event, Amelia was rushed to the Johns Hopkins Children’s Center Pediatric Intensive Care Unit (PICU) after her seizure persisted despite medical intervention. Doctors had to intubate her and closely monitor her brain activity using an electroencephalogram (EEG). After a week of intense care and adjustments to her medication, Amelia finally emerged from the prolonged seizure.
To prevent further complications and manage her epilepsy, Amelia’s care team implemented the ketogenic diet alongside medication. The ketogenic diet is a high-fat, very low-carb eating plan that has been used for many years as a treatment for epilepsy. For Amelia, this diet proved to be life-saving.
However, the prolonged seizure had caused severe inflammation in Amelia’s brain which resulted in significant physical impairments. She lost the ability to walk, move one side of her body, sit, or even hold up her head independently. Over the course of several weeks spent at Johns Hopkins and Kennedy Krieger Institute for rehabilitation purposes, Amelia’s care team developed a comprehensive treatment plan to aid in her recovery.
Dr. Eric Kossoff, pediatric neurologist and director of the Pediatric Ketogenic Diet Center at Johns Hopkins Children’s Center played a crucial role in formulating this plan. He emphasizes that while the ketogenic diet can be highly effective, it doesn’t work for everyone. In Amelia’s case, however, it has been a game-changer.
After three weeks, Amelia was finally discharged from Johns Hopkins and underwent an additional five weeks of inpatient rehabilitation at the Kennedy Krieger Institute. Steps towards her recovery involved maintaining the ketogenic diet initially but eventually transitioning back to a regular diet. Now back home, Amelia continues to receive therapy both at home and on an outpatient basis as she relearns fundamental skills like walking and regains her motor abilities.
Amelia’s progress has been promising so far, with her care team remaining optimistic about her continued improvement. Her mother, Stephanie Lavenski, is grateful for the support they have received from medical professionals like Dr. Kossoff and hopes that by sharing their story, they can raise awareness about epilepsy during National Epilepsy Awareness Month in November.
Amelia’s journey serves as a reminder of the challenges faced by individuals living with epilepsy and highlights the importance of early diagnosis and access to specialized care. Through perseverance and the implementation of holistic treatment approaches like the ketogenic diet, children like Amelia can continue to defy odds and make incredible strides towards better health and wellbeing.
Both Stephanie Lavenski and Dr. Eric Kossoff are available for media interviews to shed light on their experiences and contribute to raising awareness about epilepsy. As we observe National Epilepsy Awareness Month this November, let us stand together in supporting individuals like Amelia who inspire us with their resilience in the face of adversity.