It was late afternoon on Sept. 5 in Manhattan Beach when Jake Cleland welcomed his younger brother, Jared, home from a trip to Europe.
The 26-year-old had not been well in recent days, suffering from seizures and a delayed epilepsy diagnosis just two weeks prior.
But, he didn’t let that stop him from embracing his sibling in a bear hug with all his might.
“Just the energy he put off when he welcomed me home was something I’ll remember for my entire life,” recalled Jared, 24. “He gave all the power in his body...to show how excited he was...he used all of it to give to me...”
Neither of the Cleland brothers knew at the time that it would be their last day together.
Jake passed away in the early morning hours of Sept. 6 after seizing in his sleep.
When Jake—an avid surfer, skier, swimmer and former water polo player—was diagnosed with epilepsy on Aug. 22, he looked physically well.
The blue-eyed, dark haired son of a local real estate developer, Jake was a renowned Manhattan Beach Realtor with Strand Hill and a proud partner in his family’s business, DC Construction & Development, INC.
But the motivated young man—known for his kindness, loyalty and diligence—had been enduring frightening health complications.
Jake suffered two documented seizures, one in November 2018 and another on July 5, as well as ongoing anxiety coupled with general malaise.
“If you would’ve looked at him, you would never, ever have thought he was going to be gone,” said his mother, Robin, breathing deeply through a wave of emotion as she talks about her son. “I just think...how did it get by me? How did this get by me?”
“You couldn’t have known. We didn’t know,” comforted Jake’s father, Dennis, who expressed frustration at medical protocol that requires a patient to have two documented seizures prior to an epilepsy diagnosis.
The Clelands had just been coming to grips with Jake’s diagnosis, trying to gain more knowledge about his condition and transitioning him onto a epileptic-specific medicine from a general anti-seizure medication when he passed away.
“I’m on the computer researching the medications and never...never knowing it was epilepsy.” Robin explained. “It’s like a big puzzle and we’re putting together all the pieces to it...we’re starting to make sense of what all these things were.”
“We had less than two weeks from the time he was diagnosed to the day we lost him,” Dennis added.
Jake was a victim of SUDEP, or sudden unexplained death in epilepsy, which affects 1 in 1000 people with epilepsy, according to Rebekkah Halliwell, executive director for the Epilepsy Foundation of Greater Los Angeles, who added that 3.4 million Americans have epilepsy-related conditions.
SUDEP made headlines recently due to the death of 20-year-old Disney star Cameron Boyce.
“The exact causes aren’t well understood, but it is believed to be due to consciousness, breathing and heart function following a seizure,” Halliwell said.
In Jake’s case, possible choking due to vomiting and cardiac arrest were determined to be potential contributing factors to his death.
His family expressed frustration in Jake’s delayed diagnosis. It took more than six weeks from the time of his second recorded seizure to receive an epilepsy diagnosis from a neurologist. They say this resulted in a lack of time to gain more knowledge about the condition and support.
“I wonder...after going through this...why they wouldn’t diagnose on the first seizure,” Dennis said, noting they received a list of things not to do following Jake's diagnosis such as swimming alone. “That would’ve been another year that we would’ve had to work on the situation versus being diagnosed and then passing a week and a half later.”
“It’s just such a shame that it was such a short time period since the diagnosis and there wasn’t much time to get used to it,” Jared added.
Halliwell said her nonprofit sees delayed diagnosis as a common issue.
“We advocate for people to see specialists right away,” she explained. “People can go years without getting a proper diagnosis...it’s a big challenge - the lack of knowledge in general care and not communicating to families that a seizure disorder equals epilepsy.”
She went on to say epilepsy has not received the proper funding nor attention it deserves and expressed further conversations about the neurological disorder will be key in the future.
“I applaud this family for taking this tragic incident and raising awareness about epilepsy and sharing their story,” Halliwell said. “That’s how we’re going to propel ourselves closer to a cure...the more we talk about it, the closer we get.
The loss of their son leaves the Clelands—who also lost Jake’s twin sister Jamie shortly after their birth on Feb. 9, 1993—reeling for answers and understanding.
“If he had had a support group, had we had him longer or had we had known and had him longer…” Robin trailed off wistfully. “It just makes us so sad that we were going down so many different paths trying to find what was wrong. It’s just a scary, scary thing. So that’s why we feel that it’s so important to just get the word out about it, because...had we known a year ago...how differently we would’ve…”
“Jake wouldn’t want anybody, any other family to go through this…” she continued. “That’s just going to become something I want...education. It had to be education. You just don’t know what you don’t know.”
In memory of Jake—a ‘stand-up’ guy his loved ones say had unbridled compassion and empathy—the family hopes to educate others about epilepsy, including ways to respond if someone around you begins to seize.
“I also think educating people around you is very important too,” Jared agreed, noting he was the person who found Jake having his second seizure July 5. “Having prior knowledge…(helps you) make smarter decisions in helping that person in that situation...have the people who surround you be aware of you condition, what to do in situations and how to react…”
Halliwell recommends three general tips when someone is convulsing, including:
Staying with them.
Making sure they’re safe.
Laying them on their side in case they vomit and also putting something under their head.
“It’s also really just monitoring how long the seizure goes on for,” she added. “If it’s longer than 5 minutes, call paramedics. If someone is pregnant or turning blue from lack of oxygen, absolutely call 911.”
The community, including his many friends and family, will celebrate the life of Jake William Cleland with a paddle out at 9 a.m. Oct. 12 at 26th Street in Manhattan Beach, according to his family.
They also plan to spread the combined ashes of he and his twin sister in three special places, including San Elijo State Beach where the Cleland boys learned to surf and the mountains Jake loved so much.
But, for the tight-knit Cleland clan, Jake’s legacy will forever remain alive in the memories of a ‘go-to guy’ they say worked hard to enjoy the finer things in life and was there unconditionally for the people he cared about.
His father recounted occasions at Jake’s favorite restaurant, Ruth’s Chris Steakhouse.
“Just sitting with him and enjoying a fine meal…” Dennis reminisced.
His mother shared her memories of day spent surfing and sunning in Mexico for her birthday this April.
“Jake just made you feel special in so many little ways...he was just so clued in to giving,” Robin said. “I just look at it as I’m just so thankful that we had him for 26 years. He was a gem. He was just the best and we’re all going to miss him so much.”
As for Jared, with whom Jake shared a Redondo Beach condo, the younger sibling said he will always cherish that final day spent with his brother.
“It will be an everlasting memory that I’ll have of him, that he’d do anything in his willpower—anything in his ability—for the people he loved.”