Our daughter, Sylvie, has lived with daily seizures and physical and cognitive challenges for 15 years. Nearly that long ago, someone in an emergency room once tried to comfort me by saying, ”After you have seen 10 seizures or so, you kind of get used to it.” I have never felt that way. For me, each seizure is traumatic both for the one who experiences it and for those who love and care for her.
In caring for Sylvie, who has been diagnosed with Dravet Syndrome , our family lives in a constant state of alertness. We have to anticipate signs of a low seizure threshold, accidents, or other threats to her health and we have to be ready to prevent or remedy them. This may require making (or changing or canceling) a plan, grabbing the paper towels, giving medicine (or taking some away), providing a rest, oxygen, a bandage (or more), closing the blinds, singing a song, telling a story, hugging and kissing and often, saying a prayer. And all the while, Sylvie and her three siblings have beds to make, school to attend, friends to play with, homework to do, practice to get to, dinner to eat, books to read, games to play and a dog to walk. My friend calls it a “balancing act.”
As with any balancing act, there are challenging and discouraging times, as well as hopeful and successful times. Sylvie keeps us all going with her happy, funny, loving demeanor and her true zest for life. There isn’t anything she doesn’t like or want to try. She can befriend anyone, and it doesn’t take very long. She is a model daughter and sister if ever there was one. We are completely inspired to never fail her. Sylvie gives us opportunities to reach and grow all the time. We have reason to examine our lives and how we live them often. In doing so, we strive to be patient and flexible and to see humor in our predicaments and to “never give up” on anything. Sylvie never does. Being Sylvie’s mom has taught me to look inside myself and to think and try and live like I never knew I could.
We are grateful every day to Dr. Orrin Devinsky and his colleagues at FACES for the work they are doing to bring attention and much needed advances in treatment to those who live with Dravet. It will take some time for these advances to come. While we wait, if we families can share our experiences with each other we might be able to make a significant therapeutic impact on the lives of Dravet patients and provide meaningful support to their caregivers. For these reasons, we are encouraged by the founding of the NYU Dravet Center, and are thankful to all who have had the vision and determination to create and support this important place.
- Kathy Lammert