Sunday, April 14, 2013

The Purple Game to End Epilepsy

It was an amazing day, yesterday.



The Occidental College Girls' Lacrosse team out did themselves, supporting their captain, Lauren Wemple, who has epilepsy. Here they are pre-game, getting pumped and warmed up.


Here we are, pre-game, getting pumped and warmed up:


Here is Sophie, walking the field:


Here is Lauren and her friend Hilary -- before the game:


The team:


A bit of the game:




Here I am, making a short speech in the press box at half-time.**



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.



10 comments:

  1. Your family is awesome. And so is Occidental College!! Maybe I'll have to step in up a notch before I graduate next year...

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  2. This brought tears to my eyes...When I was young, I had first grand mal then petit mal seizures, and took anti-seizure meds from the age of three until sixteen, when my EEG results were consitently normal. I've known kids like Sophie whose parents resorted to brain surgery in an effort to stem their child's daily, often violent seizures...

    I wish I could do more than just cheer you on and praise your efforts on a blog. Hats off to you and Lauren and her teammates!

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  3. So much heart and so much grace in your speech, in Lauren and her team, in your so beautiful family. Sophie is your inspiration. What a great work she is doing on this earth, through you all. I love the photos of your three children and you with your boys especially. Between you and Mary Moon, and the weekends you've had, I can feel the planet tilting towards service and love.

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  4. Looks like a great event. I'm glad you had a chance to share your family's story. My neighbors here in London had a daughter who died from SUDEP, and they are also very involved in efforts to make it more widely known and understood.

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  5. What a brave and courageous advocate you are, Elizabeth. Not many people could write such a speech and present it over a pa system.

    Thank you to Lauren and the entire team for raising awareness to End Epilepsy.

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  6. Oh my goodness. You and Lauren have left me in tears. That speech was so beautiful. Brave, beautiful, graceful and worthy: you are all those things, just like Sophie.

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  7. So beautiful. What a gorgeous day and an honor for all involved. Looking forward to the research that the Brain Initiative allows...

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  8. love the photo of the boys and sophie and you and the boys with your cute purple paw prints on your cheeks!
    Wonderful speech - moving and inspiring! Congrats on the beautiful day!

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