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Ebony, or Ebz as she was known to her friends, passed away in her bedroom on Sunday, 16th May  2010 - three weeks after we celebrated her 21st birthday.  We never suspected that Ebony could be having seizures.


She had recently started her dream position working for a recruiting company in the mining industry.  Her employers were very impressed by her work and work ethic, telling me that she was made for the position.  She enjoyed the independence that working gave her.  Ebony had plans - the company’s head office is in Sweden, and she was so hopeful to go there and see their base.  She had also booked flights to Perth to surprise her friend for her 21st birthday.


The last twelve months or so before her passing away, Eb was chronically tired and constantly complained of headaches.  We ensured Eb had plenty of water to drink and we monitored her heart rate and blood  pressure, which was elevated.  Ebony had a few presentations to the local emergency department, as at times she complained her heart was pounding through her chest.  On numerous occasions Eb would say that her head felt funny, so again we monitored her blood pressure and, pondering solutions, we purchased a glucometer to monitor her blood glucose level, as we have diabetes in our family.  Her blood glucose level was within normal limits.


Our  local GP sent Ebony for tests which included an echocardiogram and ECG, along with several blood tests, none of which provided any answers.  As a child Eb was a chronic snorer and suffered chronic tonsillitis, so the GP sent her for sleep studies; again no answers were found.  He then decided to have an EEG performed.  Unfortunately this was booked for the week after she had passed.


As Ebony passed away at home with no suspicious circumstances, her death was automatically referred to the coroner.  Initially no cause of death could be determined, and toxicology reports were negative for alcohol and drugs.  This resulted in the need for a closer examination of her brain in an attempt to find a cause of death.  The medical examiner informed us that her brain had travelled to the best pathologists in Australia with results showing, and unbeknown to us, that Ebony had suffered previous frontal lobe seizures.  Therefore a cause of death was recorded as epilepsy.


The day of her funeral, friends came from all over Australia, which to us was a reflection of the type of person she was.  Ebony’s favourite colour was purple, ironically the colour that represents epilepsy.


Ebony was a true and very honest person.  If you were her friend you were a friend no matter what.  She was her sister’s protector, whom she totally adored.  Her last Facebook status said 'life is sweet'.


Unfortunately for us, left to carry on without her, time was not on her side.


Debbie Johnson

Global Conversation 2011


continuing the global conversation

Sudden Unexpected Death in Epilepsy
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