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 five and a half months, our world would change forever, marked by Ciara’s first grand mal seizure which lasted 25 minutes. Soon 100 myoclonic jerks per day, prolonged seizures and ER visits became a routine part of her young life.

Ciara's diagnosis and battle with Dravet syndrome led to trying seven different types of seizure medications with no improvement. We then initiated the Ketogenic Diet which produced remarkable results. However, she has recently begun to have small clusters of seizures almost every day.

While we are determined for Ciara to live a normal life, we fight to prevent the developmental delays and regression that are characteristic of children living with Dravet syndrome. Under the guidance of Dr. Paule Couture of the Pediatric Center in Stamford, CT and Dr. Linda Laux of Children’s Memorial Hospital in Chicago, along with the help of a dedicated team of special education teachers and therapists (ST, PT and OT) at the Early Childhood Intervention Center at Monroe Elementary School, Ciara is doing remarkably well.

It is our hope that with continued support, research, and raised awareness, early diagnosis and intervention will be possible for all. Despite the unpredictability of life with seizures, five-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.

In 2008, Ciara entered and won an award in the Expressions of Courage: Art by People with Epilespy Art Contest. You can see her painting here.

• Find out about Ciara's Butterfly Bash!