Our daughter Alfonsina “Nina” Davies lives on as a beacon of hope and inspiration for patients and families to rise above their disabilities such as epilepsy. At her defining 13th birthday, the first grand mal seizure struck while she was swimming in our pool with her friends. Her father jumped in to save her. Almost overnight, her friends disappeared and so did ours. Despite her secret battle with epilepsy, Nina rose from the shadows of her seizures to become a teacher. She inspired her special needs students to overcome their disabilities and achieve their dreams. She believed that everyone deserved an equal chance to succeed despite any sort of limitation.
As her mother, I can clearly recall the happiest moment of my life in 1977 when Dr. Paul Crandall, Neurosurgeon at UCLA, asked the nurse to remove the railings from my daughter’s hospital bed. Since her birth, my husband and I lived in daily and nightly fear of the next seizure until that wonderful day. She was nearly 17 and it was like a rebirth for all of us, Nina, my husband Thomas, and me.
As I watched the rails come down, I envisioned the curse of epilepsy vanishing from my daughter’s life. I believe sharing her story will bring comfort and inspiration to others. We’ve created a website as a tribute to our daughter’s spirit of determination. To share in the challenges she faced and conquered I wrote a memoir “Love Tears and Salt” that explores in depth the history of our life. Those who have reviewed the book say, “it reads better than fiction”. All the proceeds will go to Nina’s legacy.
In Nina’s memory, we have established the Dr. Alfonsina Q. Davies Endowed Chair for Epilepsy Research in honor of Paul Crandall, M.D. at UCLA. We have committed $2,000,000 which is the price set for the Academic Chair at the University. The Academic Chair will be awarded to a preeminent physician-scientist with a history of creativity, innovation, and the willingness to solve old problems in new ways.
We chose to honor Dr. Crandall’s pioneering work that helped Nina and led to UCLA’s position as a world- leader in the surgical treatment of epilepsy. With Nina’s Chair at UCLA, we hope that other individuals and families suffering from epilepsy will be able to take down the rails on the bed and no longer live in silence but instead thrive in a future without epilepsy.
With sadness in our heart and an indescribable emptiness, we have to report that SUDEP took our daughter’s life a short three years ago. Since then we have devoted our lives to bring awareness to this devastating disease that takes over 50,000 lives a year in the United States alone.