'You Just Can't Give Up': Surviving COVID-19 With Down Syndrome

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Jonathan Derr, pictured with his mother, Jo Ann Simons, survived COVID-19. Having Down syndrome put Derr at high risk of serious illness. (Courtesy Jo Ann Simons)
Jonathan Derr, pictured with his mother, Jo Ann Simons, survived COVID-19. Having Down syndrome put Derr at high risk of serious illness. (Courtesy Jo Ann Simons)

The Centers for Disease Control and Prevention's list of medical problems that increase risk from the coronavirus includes common conditions like cancer, heart disease and obesity  — plus a recent addition you might not guess: Down syndrome.

People with Down syndrome are prone to serious illness — or even death — if they contract COVID-19.

"I said, 'Why me? Why do I have COVID?' " said Jonathan Derr, a Cape Cod grocery worker with Down syndrome, after he survived a bout with the coronavirus in January.

Derr, 41, said he experienced chills and headaches, and understood that the disease could be particularly dangerous because he has Down syndrome.

"I heard about it," Derr said. "I heard about it with friends who have Down syndrome also. But you just can't give up."

Derr didn't give up, even during a scary stretch that included a trip to Brigham & Women's Hospital in Boston.

His mother, Jo Ann Simons, said she "was terrified when Jonathan's test came back positive."

"I went into this really high alarm mode because it was becoming clear that adults with Down syndrome — especially men over 40 — were at highest risk for morbidity and mortality from COVID," said Simons, who heads the Northeast chapter of Arc, a national advocacy group for people with developmental disabilities.

Simons added people often think of Down syndrome as an intellectual disability, without realizing it is caused by an extra chromosome, which also can lead to other health problems.

She said her son's complicating health conditions include congenital heart disease and lung disease. When Derr was at his sickest, Simons avoided looking at the latest research.

"I tried very hard — and successfully — not to read the studies because they were becoming well publicized the week of his diagnosis," she said. "I have since read them, and, of course, it would have made me even more nervous."

One of the most prominent studies suggested people with Down syndrome are 10 times more likely than people in the general population to die from COVID-19.

Derr and his mother believe he may have recovered well because he exercised regularly before contracting the virus. He's now back to using a treadmill and elliptical trainer.

"I do Special Olympics," he said. "Basketball, track, golf in the summer and soccer in the fall."

And like many people with Down syndrome, Derr was among the early vaccine recipients; he recently received his second dose.

Now that he's vaccinated and has fully recovered from COVID, Derr hopes to return to team sports soon.

This segment aired on March 9, 2021.


Callum Borchers Reporter
Callum covered the Greater Boston business community for Bostonomix.



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