patient story

patient name: Violet Cates

patient age: 2

condition: Infantile seizures, Aicardi syndrome

seen in: Neurology

providers: Debra O'Donnell, MD

At just 11 weeks old, Violet began experiencing unusual movements that concerned her parents. Unsure of what was happening, they took her to the emergency department at Dayton Children's Hospital, where she was assessed for seizure activity and ultimately admitted to the hospital's neurology inpatient unit. This was the beginning of a journey the Cates family hadn't anticipated.

During a two-week inpatient stay, Violet underwent extensive testing to identify the cause of her seizures. When the test results came back, her care team confirmed a diagnosis of Aicardi Syndrome.

Aicardi Syndrome is an extremely rare genetic disorder, affecting only a small number of children worldwide. It is seen more often in females than males. In addition to having seizures, almost all individuals with this condition have agenesis of the corpus callosum, which means that the bridge that connects the right half of the brain to the left half doesn't develop normally. This can cause challenges with coordination and other neurological functions. Individuals with Aicardi Syndrome can also have small holes in their retina, affecting their vision.

After receiving Violet's diagnosis, her family felt an initial wave of overwhelming emotions. They were faced with so many unknowns about her future, the potential impact on her quality of life, and what this journey would mean for them as a family. "We imagined worst-case scenarios and mourned the life we thought our child would have," recalled Elizabeth, Violet's mom.

During this difficult time, the Cates family found a source of hope in Violet's care team, specifically Dr. Debra O'Donnell. They felt fortunate to be in the right place at the right time, as Dr. O'Donnell not only understood Aicardi Syndrome but also had experience caring for two other children with this rare condition. Along with Violet's neurology care team, Dr. O'Donnell provided guidance and reassurance, helping the family understand the treatment options and what to expect moving forward.

"With the support from Dayton Children's and our family, we quickly turned our grief into focus and started to identify what was within- our control and putting everything in place to set Violet up for success after her discharge." - Elizabeth

Violet started medication to help manage her seizures while she was in the hospital. Once her seizures felt under control, she began outpatient therapy, where she continues to make progress with the support of a specialized team including neurology, developmental pediatrics, physical medicine and rehabilitation, and ophthalmology.

Violet's journey has brought challenges, but each milestone is a testament to her resilience and the unwavering care of her Dayton Children's team. Her family remains hopeful as they look forward, embracing each step of Violet's journey with courage and a renewed sense of purpose. They take pride in her progress and cherish every small victory along the way.