In January of 2002, I gave birth to my third child, a beautiful healthy baby girl, Leah. I was overjoyed with every milestone she was making, little did we know on Leah’s first birthday our world as we knew it would never be the same. While traveling on the turnpike, returning from an out of state trip, this happy go lucky baby, was now foaming at the mouth, eyes rolled back in her head, both hands in fists and violently tremoring from head to toe. I quickly learned that I would depend on emergency services weekly. After, Leah’s first seizure, her health quickly turned for the worse. Leah would have hundreds of seizures a day, no longer be able to hold her head up, the few words she had learned would soon fade way, she would now walk with a wide, unsteady, staggered drunken like gait. Leah began taken large doses of medication hoping to lessen the amount of seizures. These medications would cause her to be permanently severely delayed in all areas and completely dependent on others for all daily activates. I dealt every day as they came.

Much to my surprise, I was blessed once again with another beauty, my fourth child, Olivia, in January 2005. Never in my wildest dreams would I have ever expected what was about to happen six months later. While in the bank parking lot, I once again was witnessing, my six month old baby in the exact location in my van, having her first seizure. Over the next few years, I felt helpless watching my two amazing children fight so hard for what others take for granted. Our babies would suffer severe seizures causing brain damage, life threatening comas, very lengthy PICU stays. We spent 8 months in the hospital during the course of one years with a timeframe while both girls were on life support at the same time. We were asked on several occasions to sign organ donor papers for them, DNR papers, and over 50 helicopter transports. Finally in 2006 we were given the diagnosis of Dravet Syndrome. We have learned, there is no cure, prognosis isn’t favorable, our lives would be a roller coaster, and to cherish every second with our four beautiful child. Both Leah (11yrs) & Olivia (8yrs) along with their older siblings Lena and Chandler enjoy life, we make every effort to give them the best quality of life we can. This year both girls have participated in a Buddy Ball Program, giving them the chance to experience being on a team with other amazing children. To allow others the opportunity to watch the girls grow and learn about Dravet syndrome we created a website www.sistersnseizures.com

Leah and Olivia vs Dravet Syndrome

www.sistersnseizures.com

Dravet Syndrome page explaining the disease and the challenges faced by Leah and Olivia who have it.