We lost our beloved daughter, Dr. Alfonsina (Nina) Quintana Davies, two years ago, unexpectedly, to SUDEP.

She was a vibrant, intelligent and beautiful girl who, by the age of 27, had attained a doctorate in spite of having seizures from the day she was born.

Nina hid what she called "her dirty secret" in order to be able to work.  She lived with epilepsy for 52 years and feared its discovery.  She worried that, should she have a seizure on the job, the position would no longer be available to her.  Sadly, her concerns became a reality while she was an Assistant Superintendent in a major Southern California School District.

She was a fighter and an inspiration to all those who knew her.  She was kind, generous to a fault and had a smile that won you over at first sight.

 

In her honor, and to educate the public at large, we have authored a book:

Print Version - NINA: A STORY OF UNCOMMON COURAGE  [ISBN:978-0-9858178-0-0], available via email request to Nadia Davies.
Online Version - NINA'S COURAGE IN EPILEPSY
[ASIN: B00EVVVO4U], available through Amazon.com.

It is an inspirational and educational book, recommended by neurosurgeons at the Universities of California, San Diego and Los Angeles.

We have established an academic Chair at the University of California, Los Angeles (UCLA): the Dr. Alfonsina Q. Davies Endowed Chair in Honor of Dr Paul Crandall for Epilepsy Research.  You are able to learn more about Nina's story, her struggle with seizures and how neurosurgeon Dr Paul Crandall's experimental surgery helped her to realise her dreams of becoming a school teacher in this video.

 

We have also established a foundation, the Dr. Nina Davies Epilepsy Foundation, at the Jewish Community Foundation of San Diego.  The aim is to fund a center that will treat "the whole person" not only the "symptoms".  We are currently in discussions with a medical center of a major California University and hope to make the Dr. Nina Davies Epilepsy Treatment Center a reality soon.

 

We saw how much our daughter suffered through the years and the only available help was either medication or surgery.  No follow up.  No psychological help of any sort. Nothing but pills or surgery.  Seizures are devastating enough, but it is living with the associated psychosocial trauma that is almost as bad.  We have to do away with the stigma, the prejudice and the discrimination that surrounds epilepsy, so that people, like our Nina, do not have to suffer as they do.

 

Our message is to bring epilepsy and SUDEP into the light of day and to have epilepsy accepted with the same empathy and compassion as all other disabilities.  Please help us help those who need it most.  To stay up to date, learn more or help support our efforts, please see our website.

NinasCourage.org

Nadia & Thomas Davies

September 2013

Remembering Dr. Alfonsina (Nina) Quintana Davies (September 27, 1958 – April 18, 2011)

 

Nina, with her dad.

Nina, with one of her special needs students.