Many deaths haunt this Washington, DC, child advocate. But one hurts the most.

WASHINGTON – Marie Cohen spends a lot of her time on children’s deaths.

Harrowing abuse cases. Crib deaths. The aching neglect of the District’s vulnerable children. As a member of the DC Child Fatality Review Board, Cohen is haunted by the deaths she investigates.

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But no death haunts her like the case of Michael “Mikey” Cohen: her son.

“Mikey wasn’t a child anymore. He was 25,” said Cohen, 63. “Of the things that I’m used to seeing on that team – gun violence, or they’re natural deaths, babies – I’ve never seen, now that I’ve been on that committee for five years or six years, still haven’t seen DKA.”

DKA, diabetic ketoacidosis, is what killed her son, a kinetic, wry, mad-genius mathematician who was working on his PhD at the Massachusetts Institute of Technology when he didn’t make his usual weekend call to Mom and Dad.

In hindsight, the signs were there in recent years that he was suffering from adult-onset, Type 1 diabetes. As a kid growing up in Takoma Park, Md., he had no signs of illness.

“I know that people who met him for the first time, had the same impression: a dynamo,” Cohen said. “He was curious,” she said. He had “an intellectual curiosity. He would work on something until he’d figure it out. He was a tiny little kid, very talkative, very verbal, always asking questions.”

Mikey began studying computer programming, won awards for math Olympiad, even went to Romania for competition. For a while, his parents – his mom a social worker and policy analyst; his father, Thomas Cohen, a professor and associate chair in the physics department at the University of Maryland – thought Mikey would be a physicist, too.

But he found his passion in computers. Not in programming, but in theoretical algorithms. He was always taking a full load at MIT, at least six classes at a time. “He never sounded stressed,” Marie Cohen said.

Few of his peers – at MIT, mind you – could keep up.

“His thirst for knowledge was genuinely contagious: when we organized a reading group, we unofficially named it ‘The Michael Cohen Fan Club’ with the stated goal of learning enough to be able to understand everything Michael said,” according to an entry in his funeral book that was signed by six students. “While we can’t say we succeeded, we sure learned a lot of optimization along the way.”

His work quickly landed him an internship at Facebook, where he was an engineer during his sophomore year at MIT. After that, they were a bit surprised by his weight gain.

It was understandable, they told each other, given the endless catering Facebook does for its employees. But it was also out of character for Mikey, who hated pizza and was a fussy eater who preferred East Asian or Mediterranean food. He wasn’t the kind to pound carbs.

After Facebook, he returned to MIT to finish his undergrad degree in mathematics and to begin work on his PhD. When they saw him next, he was back to his usual, thin build.

“We told him: ‘Your pants are falling down, but you look great! You don’t have that Facebook weight anymore!” Marie Cohen said.

This was the diabetes wreaking havoc on his body. Mikey’s immune system was destroying the insulin-making cells in his pancreas, and when his body couldn’t get enough glucose for fuel, it began breaking down fat cells instead, creating chemicals called ketones. This mix of ketones, extra glucose and dehydration created the condition of diabetic ketoacidosis, which is dangerous for many and was fatal for Mikey.

Type 1 diabetes is becoming more prevalent in the United States. A 2020 report from the Centers for Disease Control and Prevention found a 30% increase in Type 1 diabetes in the previous two years and scientists don’t know exactly, why. Among the factors and hypotheses: genetics, weakened immune responses caused by improved hygiene, the possibility of a new virus or an increase in case reporting because of improved communication.

DKA has been hospitalizing and killing more diabetics in recent years. Much of that, according to a congressional testimony, is because the price of insulin has rocketed recently. Humalog, an insulin produced by Eli Lilly and commonly used by diabetics, went from $21 a vial when it was introduced in 1996 to $275 today – an increase of 1,209%. So diabetics who have been carefully monitoring and managing their illnesses for years may not be able to afford the lifesaving insulin, and DKA can prove fatal in a matter of hours.

That wasn’t the issue for Mikey. He didn’t know he was diabetic.

“No one. No signs of family history of diabetes,” Marie Cohen said. “Most of my predecessors were killed in the Holocaust, but whatever family history I know, diabetes wasn’t part of it.”

Type 1 diabetes used to be called “juvenile diabetes” because it’s often diagnosed when patients are young. And Type 2 diabetes is the kind that is usually discovered later in life and usually follows inactivity and weight gain. There have long been divisions in the medical and diabetes community about the naming and treatment of both types.

None of that was on Marie Cohen’s radar when her son was at the University of California at Berkeley with his MIT cohort in the fall of 2017. But he seemed tired and irritable in their weekly phone calls, which was unusual.

Then, when it came time for their usual weekend call, Mikey wasn’t answering. His parents got nervous. They asked one of the advisers at Berkeley with him to check in on him in his carriage-house apartment, where he lived alone.

“I’ll never forget that sound,” Cohen said, remembering that September night. “Tom dropped the phone. It just hit the ground. He said: ‘Mikey’s dead.'”

The medical examiner in California suspected DKA, mostly because there were no signs of trauma, a struggle or drugs. And partly because Mikey left behind two giant clues.

“Two garbage bags full of empty soda bottles,” Cohen recalled. “He was thirsty. It’s one of the clearest signs of DKA.” The autopsy proved the examiner right.

Cohen is trying to refine CDC data to figure out how many undiagnosed cases of Type 1 diabetes kill people every year.

Diabetes is the seventh-leading cause of death in America, according to the CDC. Nearly 50% of the people who have DKA didn’t know they had diabetes at all, according to the awareness campaign Beyond Type 1. But Cohen is trying to find a way to read all those death certificates to understand how many people died the way her son did.

It’s not a comfort, but it gives her something to work for. In the meantime, she’s working with Beyond Type 1 to publicize the signs of Type 1 diabetes, so that anyone who is rapidly losing weight and fighting headaches, growing irritable, visiting the bathroom a lot and drinking a ton of fluids will know to get to a doctor and get tested.

Mikey would have turned 30 last month. His work in theoretical math and computer science advanced the field, solving problems that had developed it for more than 50 years.

“At the age of 25, Michael was already becoming an iconic figure in the fields of spectral graph theory, linear algebra, and optimization,” academics at the Simons Institute for the Theory of Computing wrote, in a tribute to Mikey. “He made progress on a number of fundamental and notoriously hard problems: designing better algorithms for the k-server problem, computing the stable distribution of a random walk in nearly linear time, solving Laplacian linear equations faster than sorting, and developing new approaches to many sampling problems in linear algebra.”

His research was “spectacular,” according to Jonathan Kelner, Cohen’s doctoral co-adviser and associate professor of applied mathematics at MIT.

“He had already established himself as a world leader in his work… .He really was a star,” Kelner told Berkeley’s Daily Californian. “He was as talented a person in his stage as somebody who had been in his field for 30 years.”

He did most of that, his peers said, in his head.

“He was a total character. There was no one like him. He was just different,” Marie Cohen said. “One of his advisers said he was a once-in-a-generation talent.”

He made a difference in his life, the MIT community said in numerous tributes, blog posts and articles. With her information campaign, Cohen is hoping his death will make a difference, too.

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