SUDEPAware

Hadyn Kivinen had an absolute zest for life and an infectious smile.  At the age of 2 1/2 years old he had a small febrile seizure. Not long after we noticed that Hadyn could not complete a yawn and seemed a little off.  A few doctors’ appointments and many tests brought us to the conclusion that he had epilepsy. Medication was prescribed and life went on as normal with no seizure activity.  In April of 2011, while playing in a ball hockey fundraising tournament, Hadyn had his first tonic-clonic seizure.  This was unfortunately the real beginning of our journey with epilepsy.

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Over the course of four years Hadyn had experienced many different types of seizures.  Nothing stopped him from doing everything he wanted to do – from school sports (basketball, volleyball, curling) to hockey, boating, hunting, archery, air soft with his buds, video games, downhill skiing, snowmobiling and water sports, and everything in between.  Hadyn had a fierce competitiveness and a zest for all that life had to offer.  He never ceased to amaze us.  As much as we wanted to keep Hadyn in a ‘bubble’ for his own safety, we allowed him the opportunity to enjoy his life to the absolute fullest - as he had wanted.  Looking back, we have no regrets in our decisions.

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In 2013 we began our journey at the Hospital for Sick Children in Toronto.  Just months before his passing, Hadyn underwent multiple tests to determine if he was a candidate for brain surgery.

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At our last appointment, on April 23rd 2015, Hadyn’s neurologist briefly told us about SUDEP.  Less than one month later, our worst imaginable fear was realized.

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During our last weekend with Hadyn we were fortunate to be at our family cottage.  That afternoon there was a light drizzle outside and the five of us took a sauna.  Ironically enough, we had a deep conversation about 'when it is your time'.  Hadyn had much to say and informed us that the human soul has an actual weight to it.  He had read this in his continuous love of obtaining more knowledge.  Looking back, we are amazed and find some peace that we had that conversation with our smart young man.

 

Hadyn went to bed on Saturday, May 30th with his twin sisters, Morgan and Taylor, just a few feet away.  In the wee hours of Sunday May 31st, at our camp on the Key River/Georgian Bay, he passed away in a place, we believe, was his heaven on earth.

 

While living our nightmare of our sweet son’s passing, our awareness of SUDEP ensured that Hadyn’s brain tissue was donated for SUDEP research to Dr. Elizabeth Donner’s Research Team, at the Hospital for Sick Children. Also, to the NYU Langone’s Comprehensive Epilepsy Center, where we registered Hadyn's passing with the North American SUDEP Registry (NASR).  We will continue to support and bring awareness to SUDEP to help ensure that no other family will have to experience what we have.

 

Jennifer & Mark Kivinen
May 2018

www.hadynkivinen.ca