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 5 1/2 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. At the age of 2, with her development beginning to stall, we initiated the Ketogenic Diet which produced remarkable results. Although she continued to have seizures, averaging 45 minutes in length, the daily myoclonic jerks stopped, and Ciara began developing again learning to walk and talk.
Ciara began attending pre-school full time at the age of 3. When she started, Ciara had a 12 word vocabulary and was unable to jump, run or walk upstairs. The combination of Ciara’s determination and positive attitude, along with a wonderful group of therapists and teachers who educated themselves on this rare and complex syndrome produced wonderful results. Ciara learned to read, write, do math and would go on to enjoy public speaking. All of which we were told were not possibilities for a child with Dravet syndrome.
We realized Ciara’s development was not typical for children with Dravet syndrome. We decided to share her story publicly to give other families hope that the diagnosis wasn’t as grim as we were being told. In the Fall of 2009, determined to find a cure and raise awareness, Lori and another Dravet mother founded the Dravet Syndrome Foundation (DSF). Ciara quite willingly became the poster child for DSF. In addition to speaking at gala events (in front of 200+ people!), she also participated in DSF video campaigns, awareness videos for Quest Diagnostics and Nutricia, and several tv interviews. Ciara loved to help out at walks and races and knew we were all working to help her and her friends with their seizures.
Ciara attended Monroe Elementary School in a regular classroom from Pre-School through 5th grade and was a 6th grader at Jockey Hollow Middle School when she passed away.
Regardless of her seizures, Ciara viewed life as a big adventure and was never afraid to try anything new – including bungee jumping and adventure ropes courses. During her 12 years, Ciara learned ballet, tap and jazz. She loved to go horseback riding, ice skating and was learning to ski. She was a Girl Scout for 6 years and was a member of the 6th Grade Chorus and Unified Sports Team. But she loved nothing more than playing with her brother Aidan.
During the months leading up to her passing, she was averaging one seizure every 7-10 days. They would usually last less than a minute and not require rescue medication. We had not had to call 911 in over a year compared to the monthly calls we made between the time she was 2-7. She was scheduled to begin the fenfluramine trial in February. Although her developmental progress at school wasn’t progressing at the traditional pace, she was continuing to learn and grow.
The last few days of Ciara’s life were filled with family, friends, love and giggles. We celebrated her 12th birthday on Friday with the three of us and Nurse Elizabeth (an extended member of our family!); Saturday she performed in a dance recital with her Unified Dance Class on stage at our local high school; Sunday we had her birthday party at Rock-n-Jump and then had family and friends over for dinner. Although she had to take a couple of breaks at her party, the entire weekend was seizure-free and she seemed at her best! Ciara went to bed that Sunday night with a huge smile and feeling nothing but happiness and love.
The morning on Monday, January 16th, Martin Luther King Day, Lori went in to wake her to go skiing with her brother Aidan. It was supposed to be the first lesson of the season. She discovered Ciara in a postical state and called 911. She was pronounced an hour later at the hospital after everyone did what they could to save her. The cause – SUDEP (Sudden Unexplained Death in Epilepsy) and Dravet syndrome.
Despite the limits created by her having Dravet Syndrome, Ciara never complained and had an infectious positive attitude that inspired those around her – we call that Ciara’s Light.
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.
~ Lori, Liam and Aidan O’Driscoll