Here is Sophie, walking the field
Here is Lauren and her friend Hilary -- before the game
A bit of the game
Here's the team, graciously walking across the field, despite a very close game, lost by one point.
I'm so grateful that our family had the opportunity to do this with Lauren, to meet her and her beautiful team-mates, friends and family. I'm grateful, too, for my friends Susan and Lisa and their boys who came out to support us. It was a memorable day for all of us.
**Here's my speech
Hi, there! I am so honored to be standing before you this beautiful afternoon and to tell you a bit of our story. My daughter Sophie was born eighteen years ago in New York City, a typical baby girl, and my husband and I had expectations that she would continue to be a typical – perhaps extraordinary individual – whom we would love with all of our hearts. When Sophie was nearly three months old, she developed a rare form of epilepsy called infantile spasms that appeared, seemingly, out of the blue, and despite more than twenty-five medications, special diets and countless alternative treatments, her seizures continued unabated, daily, severely impacting her development and thrusting us, her family into a very different world than the one we had expected. We would never find the cause of her seizures, despite the best minds in neurology studying her.
Lauren has asked me to share her story as well. She describes her health as an ever-engaging, ever-developing, and ever-challenging facet of her life. Epilepsy has manifested itself in several different types of seizures for Lauren since she was 14. As time has gone on, she has faced these different forms of the disease head on, wanting nothing more than to subdue her symptoms and continue life as normal. The reality is, just as her body gets used to different medications and different doses, the symptoms of her epilepsy change. it has taken emotional struggle and years of frustration to finally come to terms that there probably will never be a complete solution. But epilepsy does not define who she is. It does not define her identity as an educated young woman, an NCAA athlete, a captain, a musician, a daughter, a sister, and a friend. She says she has accepted this difference and coped by putting her whole heart and body into living her life.
1 in 26 people will be diagnosed with epilepsy in their lifetime and nearly 3 million people in the USA have been diagnosed with epilepsy. An estimated 50,000 deaths occur each year in the USA from prolonged seizures, Sudden Unexplained Death in Epilepsy and other seizure-related causes. That is more than the number of deaths due to breast cancer each year. It is indeed sobering, and we are grateful to Lauren and the Occidental Lacrosse Team for bringing so much attention to our fight to End Epilepsy. Despite the struggles of my daughter and the impact of her seizures on our family, my husband, our sons Henry and Oliver, we have much for which to hope. Recently, President Obama, probably your most famous graduate (after Lauren, of course!) mentioned epilepsy as one of the diseases that will be getting attention in the new Brain Initiative. We have all of you who know a little bit more today about this disease and its broad impact on our community. We hope that you will go out and share it with everyone you know.
You know, despite the incredible hardships we’ve experienced as a family witnessing the devastating impact of epilepsy on Sophie, our expectation that we would have an extraordinary daughter whom we would love with all of our hearts has been fulfilled. Sophie is extraordinary. She inspires us every single day. She is brave and beautiful and graceful and worthy, and we are honored to share her story with you. We know that Lauren is brave and beautiful and graceful and worthy, too, (and a dang good lacrosse player!) and are proud to stand with her and her team and ask you to help us to end epilepsy.
Thank you for having us here. Thank you.