by susan axelrod | June 11, 2012 | Lifestyle
David Axelrod, Taki Oshima, and Susan Axelrod at last year’s annual benefit.
Carole King and Axelrod in 2010, when King toured Chicago.
Susan (left) and Lauren Axelrod
How can I describe the single most defining event in my family’s life?
If I told you about the morning I found our first-born child, Lauren, lying blue and limp in her crib after what I soon learned was a night filled with seizures, that would only be the beginning.
Or, what if I told you about the 23 medications that failed to control the relentless seizures, their horrific side effects, the never-ending hospitalizations and treatments, the seven holes doctors drilled in her skull to determine if they could operate on her brain, only to conclude it would not be possible?
I could describe the days Lauren would suffer dozens of seizures, waking up in between only long enough to feel another one coming on, screaming out in terror, “Mommy, make them stop!” And I couldn’t do a thing.
What if I told you about watching her development deteriorate as the seizures and medications wreaked havoc on her behavior and her ability to learn, and how it felt when she moved into a supported- living arrangement 10 years ago because of the residual damage of all those seizures?
I still don’t think I would have adequately described the potential devastation of epilepsy, and how repeated, uncontrollable seizures rob children of their potential—and parents of their dreams and hopes.
Epilepsy affects millions. One in 26 Americans will develop it at some point in their lives, with the highest incidence in childhood and in senior citizens. There is a huge spectrum of impact—so some can live their lives with minimal disruption, but many are like Lauren—or worse. Tens of thousands lose their lives each year.
But epilepsy has not had a public spokesperson, so very few whose lives are not directly affected realize what a major personal and public health problem it is. That is why, in 1998, I founded CURE (Citizens United for Research in Epilepsy). To date, we have raised more than $18 million for epilepsy research.
This year, we are thrilled and honored to have acclaimed songwriter, performer, and author Carole King joining us for our Annual Benefit on June 15 to help raise the funds we desperately need—funds to support the research critical to finding a cure.
A lifelong fan and admirer, I was thrilled to meet Carole at an event in Washington two years ago. The last thing I expected was for her to already know about CURE and our personal story. I was stunned and touched. She invited Lauren and me to her Troubadour Reunion Tour with James Taylor at the United Center, which turned out to be the most memorable mother/daughter experience we’ve ever shared. Music always has played a major role in Lauren’s life—she loves listening and even performing in the choir at Misericordia, where she now lives. Carole included us in the pre-show sound check and invited us to a personal backstage visit after the concert.
So when I reached out with what I knew was an audacious request for her to perform here in Chicago, her response took my breath away: She said, “I’d love to.” We know her involvement will be enormous for this cause.
We are beginning to unravel the mysteries of epilepsy. Incremental advances and our laserlike focus on breakthrough discoveries that will lead to prevention and cures give us all hope. But I still receive calls from frightened parents whose children have just been diagnosed, and our scientific understanding is not yet to the point where we can guarantee they will not travel the same path that we did with Lauren.
With increased focus and resources—along with friends like Carole King—we will conquer this disease that has plagued mankind since biblical times. Lauren is a shining example. Twelve years ago, her seizures succumbed to a brand-new medication, and she has been seizure-free since. She is not cured—she still takes three daily medications and cannot live independently without support—but she lives a life that is far richer and fuller than anything we ever dreamt would be possible, based on the first 18 years of her life.
We are dedicated to accelerating the research that will one day allow all kids to live their lives free of seizures and epilepsy, and we are so grateful to Carole King for lending her amazing voice in support of this cause.
To purchase tickets to The CURE 2012 Chicago Benefit ($150–$350), featuring a performance by Carole King, visit cureepilepsy.org/chicago2012.
photography by david w. johnson; hair and makeup by frances tsalas at chicagoemergingartists.com; styling by jacki debb at chicagoemergingartists.com. Susan’s dress, jenny han ($194); lauren’s dress, rebecca taylor ($250). neiman marcus, 737 N. Michigan ave., 312-642-5900; ed rode/getty images (izard); mike coppola/getty images (rogers); stephen dunn/getty images (wood)