Her parents, Tara and Tyson Carpenter, have two other daughters, 5-year-old Audrey and 9-year-old Hailey, who is on the autism spectrum. As for many parents, the pandemic has been a nightmare of missed school, unproductive work, restrictions and confusion. But on top of all the anxiety so many parents feel lies the concern for their toddler. They don’t know how to help her.

“It was just super frustrating,” says Tara Carpenter, who is quick to add that no one’s to blame. “We’re trying to find out answers for our kid and nobody could give us any. And it just was really frustrating.”

Alyssa would wail in pain from her red burning feet or whimper quietly. She’d come down with a fever, but suffer no other symptoms and be sent home from school for days, ruining Carpenter’s work week. But then in ballet class, with her pink tights and tutu, she’d seem totally normal.

In the past few months, symptoms have started to subside and it’s giving the family some relief.

“After the fact, what do we do about this?” asks Tara Carpenter. “We don’t know. We literally don’t know.”

For some families in the study, the child suffering from long COVID is the easy one during the hospital visits.

One recent day, another family finds that it’s the older sister Charlie who dissolves into tears because she doesn’t want blood drawn while younger sister Lexie, used to being prodded by nurses and doctors, hops up on the table. The family dynamics of COVID-19 are tough: The sibling with the illness may get more attention, which can create problems for the others. Exhausted parents struggle with how to help all their children.

In their work-ups, the children receive full medical check-ins. They also receive a full psychological assessment, run by Dr. Linda Herbert.

Herbert asks the kids about fatigue, sleep, pain, anxiety, depression and peer relationships. Do they have memory concerns? Are they having a hard time keeping things in their brains?

“There’s this constellation of symptoms,” she said. “Some kids are incredibly anxious about getting COVID again.”

She said psychological symptoms are among the most common, and it’s not just the kids with COVID-19, it’s their siblings and parents, too.

Danielle Mitchell feels the stress. She’s a single mother working full time, grieving the loss of her partner and trying not to seem too depressed in front of her daughter. The decision to enroll her daughter Brooklynn in the study was motivated by wanting to draw attention to the need for vaccines, particularly in the Black community.

“My baby keeps getting it,” she said. “Can’t the people around us try to protect her?”

Brooklynn whimpers when she hears she has to get blood drawn: “Do you have to?”

“Yes, baby,” the nurse says. “It’s so we can figure all this out.”

“If her daddy was here, he’d take her to Dave & Busters after this,” Mitchell says, before lowering her voice so her daughter can’t hear what she’s going to say. Her longtime partner, Rodney Chiles, wasn’t vaccinated.

He had qualms, like many do, about the vaccine and was waiting to get it. Shortly after Brooklynn tested positive during the run of the delta variant, he started feeling sick and went downhill fast. Chiles had pre-existing conditions, too, which accelerated his death. He was 42.

“And then he called us on a Sunday. He was like, ‘They are about to intubate me because I can’t keep my oxygen up. And I love y’all and, Brooklynn, forgive me,’” she said. It was the last time he talked to them before he died.