PORTLAND, Ore. (KOIN) — The thing about time is we always think there’s going to be more — until one day, just like the final word in a letter, it stops.
“Hello to whom is reading this diary. My name is Wiley Storment. I’m eight years old. I was born in Portland and I live in a house in the forest. I believe that I will develop technology later on in my life.” This is the first and last entry in the diary of a little boy who had a big personality and even larger dreams. Now, his parents J.R. and Jessica are continuing his passion for writing in their own words.
“One of the countless difficult moments of this month was signing his death certificate,” said J.R. “Two fields further down the form crushed me. The first said, ‘Occupation: Never worked’ and the next, ‘Martial Status: Never married.’ He wanted so badly to do both of those things.”
“I take solace in the fact that it was peaceful,” said Jessica. “Wiley was warm and happy and asleep in his favorite place next to someone who loved him. If I were to design my own death, it would be exactly that.”
Time stopped for J.R. and Jessica Storment on a Wednesday morning in August.
“She called and she said, ‘Wiley is dead,'” said J.R.
Just a day before, their twin boys were enjoying a playful summer night. The next morning, Jessica let Wiley sleep in but grew worried as time passed.
“It struck me as weird that Wiley hadn’t woken up and joined in — I could only hear one of them,” she said.
She knew immediately something was wrong.
“My child was laying on his stomach… and I knew that he was gone,” said Jessica.
Wiley died of SUDEP, the sudden, unexpected death of someone with epilepsy—something his parents never saw coming.
“It was entirely crushing because it takes everything away from you in one moment,” said Jessica.
“All the tens of thousands of choices I would have made if I ever considered that my fascinating, healthy little boy was just going to be gone without warning,” said J.R.
Their only clue: a benign Rolandic epilepsy diagnosis a year prior. Wiley was diagnosed after having the first and only seizure his parents know about.
“By definition, something that is benign should not kill you,” said Jessica.
According to the Epilepsy Foundation, benign Rolandic epilepsy is a common syndrome, affecting approximately 15% of all epilepsy in children. They say in almost every case seizures stop on their own by adolescence.
“The pediatrician basically said, and the neurologist we consulted said, ‘it’s the best form of epilepsy he can get. It is only going to affect him at night and he is going to grow out of it by the time he is a teenager,'” said J.R.
But, Wiley never even made it to double digits. Now his parents are looking for ways to prevent other families from wishing they had more time, too.
KOIN 6 News sat down with the Dr. Colin Roberts, Director of the Childhood Epilepsy Program at Doernbecher Children’s Hospital to learn more about the disorder. Most children are typically diagnosed with Rolandic epilepsy from the ages of 5 to 8 and grow out of it. Dr. Roberts said SUDEP is extremely rare affecting one in 5,000 children and one in 1,000 adults who have epilepsy.
Doctors are able to connect the two when there is no other cause of death that can be found. But, there is still little information on what causes SUDEP.
In July 2019, former Disney star Cameron Boyce died from SUDEP at age 20. The Cameron Boyce Foundation and the Epilepsy Foundation have joined together to create “Know SUDEP Now,” an initiative to bring awareness and raise funds for research.
“It is so under-talked about and we just don’t know enough about it to really understand how to prevent it better,” said Jessica. “Parents should know that there is the possibility that this child will not wake up tomorrow.”
They’re pushing others to cherish every second with their children.
“Many have asked what they can do to help,” said J.R. “Hug your kids. 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.”
“We limit them, we guide them, we parent them and all of that is important but at the same time we also have to remember to just love them,” said an emotional Jessica. “Because the one thing I think about so often is did he feel as much love as I felt for him.”
Life looks very different now for the Storment family.
“Our family of four now has to learn to be a family of three,” she said.
They’re holding onto each moment a little bit longer.
“If there’s any lesson to take away from this, it’s to remind others—and myself—not to miss out on the things that matter,” said J.R.
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