“I guess it was just his time.”
Those have to be extremely difficult words for any parent to say about their child, but it's really the best explanation Jennifer Kivinen can come up with for the death of her son, Hadyn. He died on May 31, 2015, from Sudden Unexpected Death in Epilepsy (SUDEP). He was 15.
“It's very difficult,” she said, of how she makes it through each day.
Jennifer, her husband, Mark, and their twin daughters, Taylor and Morgan, are left to grieve the loss of their son and brother.
“We're plugging through,” she said. “You have two choices – either your roll over and die, or you can try your best to survive and remember.”
On the website they built to remember Hadyn, the Kivinen family recounts the last day they spent with him. It was May 30, 2015 at their family camp on the Key River/Georgian Bay. After a day typical day, Hadyn, his sisters and friends went to bed. Hadyn never woke up.
“There was nothing that could have been done to prevent it,” Jennifer said. “Hadyn didn't fall into any of the risk factors of SUDEP. He lived a very normal life for a kid his age. I guess that's why this came as such a shock to all of us.
“Yes, he had epilepsy, but he wasn't having seizures every single day. He was quite controlled. I guess it was just his time.”
It was just after he turned three that Hadyn was diagnosed with epilepsy.
However, it never really seemed to phase him, his mother said, until April of 2011, when Hadyn had his first tonic-clonic seizure while playing ball hockey.
Over the course of four years, Hadyn experienced a variety of seizures, but it didn't stop him from doing what he wanted to do. He has sporadic seizures,
Jennifer said, but he played basketball, volleyball, curling and hockey. He loved boating, hunting, archery — anything that could get him outdoors and active.
In 2013, the family started traveling to the Hospital for Sick Children in Toronto, where Hadyn underwent tests to see if he was a candidate for brain surgery.
At their last appointment on April 23, Hadyn's neurologist talked briefly about SUDEP, Jennifer said.
Just over a month later, Hadyn died. In order to help researchers learn more about SUDEP, the family donated Hadyn's brain to Dr. Elizabeth Donner and her team.
In SUDEP cases, no other cause of death is found when an autopsy is done, according to the Epilepsy Foundation. Each year, more than one out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled, the risk of SUDEP increases to more than 1 out of 150. These sudden deaths are rare in children, but are the leading cause of death in young adults with uncontrolled seizures.
Until further answers are available, the best way to prevent SUDEP is to lower your risk by controlling seizures.
To help remember a teen with “an infectious smile,” the Hurry Hard for Hadyn Fundraising Fun Spiel curling event was launched last year to raise money and awareness of SUDEP. It's being held at the Sudbury Curling Club, and while all of the spots have been filled on the roster, the community is being encouraged to come out and make a donation in support of epilepsy and SUDEP research.
Last year's fun spiel raised more than $10,000, Jennifer said.
“It was amazing,” she said. “It was super emotional. We actually had Hadyn's doctor from Sick Kids participate. It's the support of our family and our community that gets us through day to day.
“(SUDEP is) quite rare, and it is definitely needs to be researched and answered. Right now, there are coroners and medical professionals who don't even know about it.”