Leah and Olivia McGurk both suffer from Dravet Syndrome, a catastrophic form of epilepsy.
Leah was born January 2002, healthy as can be. Her first year of life was completely normal. Leah’s first seizure began the week of her first birthday, On a cold Sunday night around 9pm, while traveling on the PA turnpike returning home from New Jersey, I turned around to look back at all of my children when I saw one of the most horrific sites I could imagine. There was my baby girl, tremoring from head to toe, hands in fists, foaming at the mouth, skin tone a pale blue color and her big beautiful eyes were rolled back into her head. We made our first of many 911 calls, and local state troopers responded and escorted us to Ephrata Community Hospital. This was only the beginning for this little girl, as months went on, she would be prescribed dozens of different anti-convulsive pharmaceuticals, most of which left her unable to hold her head up, walk, or talk. She was heavily medicated over the course of the next few years in hopes of gaining some seizure control. She was life flighted over a dozen times, we made hundreds of ambulance and 911 calls, and spent over 500 days in the hospital.
March 2006, Leah took a turn for the worse when she began seizing, which continued into non-convulsive status seizure. After trying experimental medications over the course of a few days we were told Leah would more than likely not survive. Leah remained in a coma for over 45 days in the PICU. Her hospitalization was over five months, which was followed by rehabilitation for therapies. Currently Leah has had surgery three times for her Vagal Nerve Stimulator. We have tried all medications available to us in the U.S. and Canada. She has remained on a minimum of no less than five anti-convulsive medications at a time, she is severely developmentally delayed, nonverbal, and is completely dependent for her daily care.
Leah’s younger sister, Olivia, was born January 2005, again healthy as can be. Olivia is the youngest of my four beautiful children. The odds of having 2 children with Dravet are very slim. We are one of 7 families in the world, that I know of, to have two children with this rare regressive syndrome. Olivia’s first seizure happened at the bank when she was only 6 months old. Once again, I had to witness another one of my babies blue in face, eyes rolled back, foaming at the mouth. 911 was immediately called and she was transported to a local hospital, where she was immediately air lifted to a children’s hospital as they could not get her seizure to stop. Over the course of the next year we spent more time in the hospital with Leah and Olivia than at home. Our life was a roller coaster.
On January 22, 2007 (only months after Leah awoke from her coma) Olivia had a seizure lasting over 6 hours, and causing permanent brain damage. She remained in The PICU for months on life support and failed estuation and medications several times. She continues to have brain damage and swelling on the left side of her brain.
Over the last few years, my girls have tried all prescribed medications available, have been life flighted, hospitalized, undergone surgeries, testing, and therapies of all sorts, all in hopes of gaining control of their seizures and regaining abilities lost due to side effects of medications.