Our son Tyler passed away on January 23rd 2011, from a seizure in his sleep, at the young age of 20.  A sophomore at university, his death occurred on a Friday night and he lay in his bed face down for almost 48 hours in his college dorm room, alone.  When residents thought something might be wrong, they called campus police and he was found.  We had spoken to Tyler that Friday night via text messages.  We wished him good night and told him that we loved him.  No parent thinks about having to make funeral arrangements for their child.

 

Tyler had a febrile seizure at 19 months old.  Ten years later he had his second seizure.  Over the next seven years ambulance rides, emergency rooms, EEGs, MRIs, CT scans, hospital stays, and medication changes became the norm.  The side effects from the medications, including memory and cognitive issues, were disheartening.  A neurosurgeon pointed out a ‘lesion’ in Tyler’s left temporal lobe and the discussion of surgery began.  When we were told that after surgery ‘he would never have seizures again’, the decision was made for Tyler to have most of his left hippocampus removed.  The recovery went well and we were hopeful, but three months later he had another seizure.

 

Tyler started college in 2009 and we constantly worried about him.  He was having problems concentrating and remembering things for tests due to the meds.  He especially enjoyed video games and in the future he wanted to write games.  He became president of the Gamer’s Club at school.  One day Tyler passed out on the ice rink but no seizure was noted.  The doctor recommended getting his heart checked but the tests were all normal.  We were NEVER told that Tyler could die from epilepsy or a seizure.  However, SUDEP is an acronym that we have come to know all too well in the days and months following his death.

 

We are a devastated family and we are still in shock.  It is just five months since his death.  Holidays and his birthday which has just passed, bring bad days.  A big piece of us was taken away.  His room is untouched and we go in there and just sit.  It smells like Tyler.  The guilt, anger and the constant thoughts of what we should have done differently go through our minds every day.  Tyler was patient, loving, gentle, and very smart. He had lots of potential.  Now we visit the cemetery every weekend and take flowers.

 

We wish that we would have been told about SUDEP sooner.  We would have done things differently.  We have established a scholarship in Tyler's name at the University, for students with epilepsy.  We want to keep Tyler’s memory alive and show that he did not die in vain.

 

Mark and Coral Stevenson

Global Conversation 2011