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Rachel’s Story: "I was 12 years old and attending an Open House at the school where my mother taught. As I played a computer game meant for children much younger than myself, my mother noticed I was just staring at the screen. When she asked why, I simply answered “I can’t see the questions.” My mother says the next thing she knew, I was on the floor and she thought I was choking on my gum. As she held me in her arms, I went limp and she thought I had died. It never occurred to her that I was seizing.
When I awoke, I was lying on the floor surrounded by paramedics and people from the school, including a few of my peers. I remember thinking to myself that I was part of a demonstration at the Open House about emergency response procedures. Pretty absurd, right? That happens every time. For the first minutes after I come out of the seizure, I always think something completely different is happening. People close to me know that I want them to keep telling me who I am and what is really happening until I can make sense of it again because I find that dream-like state to be rather unsettling. It’s like being awake but not completely in touch.
After undergoing many tests, the EEG being the most brutal (no sleep, electrodes stuck to my head with hot wax), I was diagnosed with Juvenile Myoclonic Epilepsy (JME). JME is characterized by small, uncontrollable jerking movements, usually in the extremities. Following the myoclonic jerks, I will usually experience a grand mal seizure. I consider myself lucky to have the "jerks" as somewhat of a warning sign of what is coming next.
Since my first seizure, I've had probably around 10 or 15 more (I didn't track them). Now I am 31 and my seizures have been controlled through medication (Depakote ER) for a solid six years! Yay! Still though, epilepsy continues to impact my daily life. I will most likely be on medication for the rest of my life and I can never go see the Blue Man Group (strobe lights in the show). However, I am the wife of an amazing and supportive husband and the mother of a beautiful and healthy three year old daughter.
My Family and Friends, Team Twinkle Toes, walk for everyone with Epilepsy in hopes of not another moment lost to seizures."
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Check out pictures from our Walk in Boston, MA and this video of last year's Brevard Walk!
<3 Team Twinkle Toes