SUDEPAware

Thomas was my third born child and only son.  He was the most beautiful baby you could  imagine and he grew up to be a handsome young man.  He had three mothers – his oldest sister Julie was 8 when he was born, and Leanne was 6.  He would sometimes wish for a brother!
 
It was a shock when Thomas was diagnosed with epilepsy when he was 18 years old.  He had a number of challenges and to have one more seemed totally unfair.  He took it in his stride though and never in a million years did any of us think he would die from it.  He suffered with uncontrolled Grand Mal seizures, despite seeing 4 different neurologists.  My heart would break for him as he dealt with the aftermath of a seizure.  He only had seizures when he was sleeping and he would wake up incoherent, with such bad pain in his head he would throw up all day.  He would get thrown from the bed during a seizure and would often end up with cuts and bruises on his head and body.  Occasionally he would have two or three seizures in the same day and he would end up in “emerg” receiving seizure medication intravenously, as well as fluids because he would be dehydrated.  He hated hospitals and would avoid them at all costs, only going when I could strong arm him into it.  Not an easy task!  He was 6’ 2” and a big boy!!  He also was hospitalized for a week once due to complications from multiple seizures that resulted in a collapsed lung where emergency procedures were done, followed by surgery.  That gave us quite a scare, but still, we never imagined it would take his life one day. 
 
Thomas held two part-time jobs.  One at Mark’s Work Warehouse and one at Best Buy.  His seizures would greatly affect his ability to work so he would not get many hours and thus needed two jobs to try and make ends meet.  He was very independent and had his own apartment.  Had I known about SUDEP and how important it was for him to be supervised, I would have done my utmost to have him live at home in a separate apartment space and I believe Thomas would have agreed.  He also would have been more diligent about ensuring he took his meds, and I would have worked even harder to make sure he did also.  How were we to know he would die of something not one single neurologist ever told us about?
 
In May, we finally saw an Eptileptologist in the hope that he could help get Thomas’ seizures under control. In our consultation appointment he never mentioned SUDEP either.  Sadly, we never even had the MRI appointment before Thomas died in his sleep – peacefully, according to the coroner.  Because he lived alone, we didn’t know he had died until the next day.  He’d been gone over 24 hours.  It was a devastating shock.  How could this have happened?  He was only 24.
 
Thomas was so loved by his family and was such a good friend to others, often helping them out in time of need.  He had a gentle soul and was a total goofball, which we loved so much about him.  His eclectic taste in music made him a favourite to work with at Best Buy because everyone could agree to listen to his playlist. And he was considered one of the family at Mark’s.
 
I feel so sad that he will never have the opportunity to fall in love, get married, have children and find his career path.  He loved music so much and I believe that eventually he would have found a job in that field.  It was his passion.

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On this 1st anniversary of his death we are still reeling. Life will never be the same. If we can help even one family avoid our heartbreak it would honour my son and we would be so thankful. 

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Rest In Peace my dear son. Know that you are loved and missed more than words can say, Thomas.

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Mary-Anne Fish
June 2018