Hadyn had a febrile seizure at the age of 2 ½ years of age. At the age of 3 years old, we noticed that Hadyn could not complete a yawn and seemed ‘off’ – a doctors’ appointment and many tests brought us to the conclusion that he had epilepsy. Medication was prescribed and life went on as normal. 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.
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 (competitive then down to playground league), from boating, hunting, archery, airsoft 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.
In 2013 we began our journey at the Hospital for Sick Children in Toronto. Most recently, Hadyn underwent multiple tests to determine if he was a candidate for brain surgery.
Tests included MRI’s, MEG’s, a five day stint at the Epilepsy Monitoring Unit, psychological/behavior assessments and more. We unfortunately never got to hear the end result of these tests, however their best guess is that surgery would not have been an option.
At our last appointment on April 23rd, 2015, Hadyn’s neurologist briefly told us about SUDEP. One month later, our worst imaginable fear was realized.
Hadyn passed from SUDEP in the wee hours of Sunday, May 31st at our camp on the Key River/Georgian Bay – which was his heaven on earth. While living our nightmare of our sweet son’s passing, our awareness of SUDEP ensured that Hadyn’s brain was donated to Dr. Elizabeth Donner’s Research Team for SUDEP research. We will continue to support this cause to ensure that no other family will have to experience what we have.