SUDEPAware

We only learned about SUDEP upon the death of our youngest child and only daughter, Lisa.  The tragic end of her precious life, the lack of understanding of why it happened, and what we could have done to save her will haunt us forever.  It is important to us, as her parents, and to her three older brothers, to ensure that something positive will come from our heart-breaking loss.  Awareness must be raised and funds secured in order to solve the mystery of SUDEP; and to provide patients and families with methods of effective prevention.  Current medical knowledge and understanding is a long way from being able to do so.  It is our hope that awareness and research into this horrible complication of epilepsy will increase and receive the attention it warrants.

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Lisa had no idea she had epilepsy.  In late spring 2009, at the age of 23, Lisa started to notice some numbness and swelling of her lower lip, usually worse in the morning.  The cause of this lip numbness was not immediately apparent.  Her doctor thought that it might be related to a food allergy.  On the long July weekend in 2009, she fell asleep on the couch while watching TV.  While asleep, a tonic/clonic seizure was witnessed by family members.  She awoke with no ill effects other than a numb lip, and no recollection of anything out of the ordinary.  She was rushed to the emergency ward, and underwent urgent CT and MRI scans.  All came back normal, as did a sleep EEG study. 
 
Lisa came under the care of a neurologist, and was diagnosed with nocturnal epilepsy. She responded well to her medication (Clobazam) and adapted her lifestyle.  For two and a half years she was virtually seizure free.  Only one other subsequent seizure was ever witnessed and occurred while Lisa was travelling.  On a single other occasion (13 months before her passing), a seizure was suspected when she awoke with a numb lip.   
 
Lisa was a busy student studying dentistry at the University of Toronto.  She was bright, beautiful, and a joy to her family, friends and fiancé.  She had her future planned, and she was extraordinarily happy.  Lisa was very careful with her health.  She always took her medication, avoided alcohol, and saw her neurologist regularly.  Her nocturnal epilepsy seemed a minor inconvenience.  SUDEP was never discussed with Lisa or her family.  We all thought that Lisa was safe.  Only later did we learn that Lisa was in a high-risk age group, and also at risk because her seizures only occurred during sleep.
 
We last saw Lisa on January 15, 2012.  It was a family birthday, and Lisa was her usual wonderful and vibrant self.  She went to school on January 18, and to a student social function later that evening.  When we couldn’t reach her by phone, her father entered her apartment and found her lifeless body face down in her bed.  She had not attended classes for two days, and it was determined that she died the night of January 18th.  SUDEP was listed as the cause of death.  She was twenty-five years old. 
 
We love you Lisa….
 

Mary Lou & Walt Montanera

June 2013