Three weeks ago, Jessica Brandes noticed her son, Wiley, 8, seemed to be sleeping quite late.
At first, the Oregon-based naturopathic doctor brushed it off as just a tired kid getting some much needed rest. But she became suspicious when Wiley didn’t wake to the sound of his twin brother Oliver playing on an iPad right next to him.
Brandes moved closer.
“He was under a blanket and his feet appeared mottled,” she wrote in a LinkedIn post that’s since gone viral. “That was the moment. The moment I knew what was coming next.”
By looking at the deep purple color of Wileys legs, Brandes was able to determine that he had been dead for at least eight hours.
Brandes started to dial 911, but hung up and called her husband.
J.R. Storment, who co-founded the tech company Cloudability, was at his office when Brandes delivered the gut-wrenching news.
"Eight years ago, during the same month, I had twin boys and co-founded Cloudability," Storment wrote in his own viral LinkedIn post. "About three months ago Cloudability was acquired. About three weeks ago we lost one of our boys.
"When I got the call I was sitting in a conference room with 12 people at our Portland office talking about PTO policies. Minutes earlier, I had admitted to the group that in the last 8 years I’d not taken more than a contiguous week off."
That morning, Storment left without saying goodbye to kids. Instead, he took work calls.
“None seem that important now,” he wrote.
Now, Brandes and Storment are urging parents to prioritize time with their children.
“If we’ve learned anything at all, it’s that life is fragile and time really can be so cruelly short. We wish a lot of things were different, but mostly we wish we’d had more time,” Brandes explained. “Take your vacation days and sabbaticals and go be with them. You will not regret the email you forgot to send.”
Storment echoed the sentiment, urging people to step away from their computers. “Don’t work too late. A lot of the things you are likely spending your time on you’ll regret once you no longer have the time,” he wrote. “I’m guessing you have 1:1 meetings on the books with a lot of people you work with. Do you have them regularly scheduled with your kids? If there’s any lesson to take away from from this, it’s to remind others (and myself) not to miss out on the things that matter.”
Though it will take approximately four months to officially declare Wiley’s cause of death, Storment and Brandes believe that Wiley, who suffered from rolandic epilepsy, most likely died of a phenomenon called SUDEP (sudden unexplained death epilepsy.) SUDEP claimed the life of Disney Channel star Cameron Boyce in July.
“It’s somewhat similar to SIDS in infants, where they aren’t sick with anything else at the time,” Dr. Julia Henry, a neurologist at the University of Chicago Medicine Comer Children’s Hospital, previously told TODAY. Each year, more than one in 1,000 people with epilepsy die from SUDEP.
“I take solace in the fact that it was peaceful,” Brandes wrote. “Wiley was warm and happy and asleep in his favorite place next someone who loved him. If I were to design my own death, it would be exactly that.”