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Ciara’s Story

On January 13, 2005, we were blessed by the birth of our daughter Ciara (Kee-ra), a beautiful, perfect baby born without any obvious health issues. Little did we know that at 5½ months, our world would change forever, marked by Ciara’s first grand mal seizure which lasted 25 minutes. Soon, hundreds of myoclonic jerks per day, prolonged seizures and frequent ER visits became a routine part of her young life. Her diagnosis and battle with Dravet syndrome led to trying seven different types of seizure medications with no improvement. Two days after her second birthday we initiated the Ketogenic Diet at Children’s Memorial Hospital in Chicago. Our hope was that the diet might decrease her myoclonic jerks by half. Remarkably, within in two weeks of starting the diet her myoclonic jerks stopped completely. Despite an aggressive intervention plan, at the age of 3, Ciara had a 12-word vocabulary and was unable to jump, run or walk up stairs. The day after her third birthday, she began attending preschool. There, a wonderful group of therapists and teachers educated themselves on the Ketogenic Diet and this rare and complex syndrome, and refused to set limitations on Ciara’s potential. Defying the odds, Ciara now speaks in complete sentences. She is able to jump and jog and is determined to master the stairs. Despite her significant progress, we continue to fight to conquer developmental delays and prevent regression. The Ketogenic Diet gave Ciara a quality of life that no typical medication could provide. Since the Diet stopped her myoclonic seizures, she no longer had to wear a helmet and soon began walking. There was a sparkle in her eyes that didn’t exist before the diet which we attribute to the clarity it provided her with. The challenges of the diet are manageable and we consider them small sacrifices given her improved quality of life. Our only regret is not having initiated the diet sooner. Despite the unpredictability of life with seizures, four-year-old Ciara is a thriving, happy girl who loves her brother Aidan, school, dancing and butterflies. She has a long road ahead of her, but we are forever hopeful for her future – despite the odds. Lori and Liam O’Driscoll

Update: Sadly, Ciara passed away on January 16, 2017 from SUDEP. Her family has since established Ciara’s Light Foundation. “Through Ciara’s Light Foundation, we will honor Ciara’s memory and spirit by helping other children with special needs and life threatening conditions by providing them with opportunities and services to improve their quality of life. We will also work to raise awareness for SUDEP and Dravet syndrome.”

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