Bonspeil raises money, remembers 'amazing kid'

A Sudbury family – and their friends – raised $10,000 for Canadian epilepsy research Sunday in memory of Hadyn Kivinen.

Hadyn died of sudden unexpected death in epilepsy, or SUDEP, on May 31, 2015. He was only 15 years old.

“He was an amazing kid,” said his mother, Jennifer Kivinen. “He drove a boat, he hunted, he did archery, he played hockey, was involved in curling. He did everything.”

Hadyn lived his short life to the fullest, his family said.

On his last day, Hadyn went to the family camp with his parents and sisters Taylor and Morgan. They had homemade French onion soup for lunch, and enjoyed some time in the family sauna together.

“Oddly enough, we had a conversation about when it's your time, it's your time,” said his mother.

That evening she said they got to witness a beautiful sunset. Hadyn went to bed, but didn't wake up the next morning.

Dr. Elizabeth Donner, a pediatric neurologist at Toronto's Hospital for Sick Children, said Hadyn likely had a peaceful and painless death.

His sisters slept in the same room that night, but didn't hear any convulsions associated with a serious seizure.
But that made his death all the more shocking.

SUDEP is very rare, said Donner. It's estimated to affect around one in 1,000 people who suffer from epilepsy. In children it's even rarer, affecting around one in 10,000.

The diagnosis is made after no other cause of death could be determined from an autopsy.

Donner and her colleagues are working on collaborative research to better understand the causes of SUDEP, and who is most at risk.

“Preventative strategies will be developed when we can figure out who's at risk,” she said.

Epilepsy is a broad condition, she said, and doctors do know people who experience uncontrolled seizures – that can't be treated with medications – are more likely to die of SUDEP.

SUDEP is also more often seen in epileptic people who choose not to take their medications.

“Unlike Hadyn, there is a proportion of people with epilepsy that have trouble sticking to taking their medication,” said Donner.

Shortly before he died, Hadyn had undergone tests to see if he would be a good candidate for a surgical intervention to cure his epilepsy.

In some cases, doctors can pinpoint the part of the brain responsible for causing a person's seizures.

“When a person has a seizure it's due to an electrical disturbance in the brain,” Donner said. “Some people say it's like an electrical storm in the brain.”

If they can pinpoint that part of the brain, surgeons can sometimes remove it with minimal side effects.

But in Hadyn's case they were not able to determine which part of his brain caused his seizures.

In addition to their monetary donation to SickKids' epilepsy research, the Kivinens also donated Hadyn's brain to Donner and her team so they can better understand what caused his death, and if there are any genetic links.