19-year-old Simone Scott was excited to get her second dose of Moderna’s Covid vaccine on May 1.

Now her mother Valerie Kraimer is arranging her funeral.

Simone, a first-year-student at Northwestern University, suffered a case of apparent myocarditis-induced heart failure on Sunday, May 16. Despite extraordinary measures to save her, including a heart transplant, she died Friday morning at Northwestern Memorial Hospital in downtown Chicago.

Now her mother and father are struggling to understand what happened to their daughter – and why they had no idea that the Covid vaccines might be anything but safe.

“I lost my only daughter,” Kraimer said in an interview Sunday night. “I never thought I’d have to give up my daughter for the greater good of society.”

Unfortunately, doctors appear to have repeatedly missed signals as Simone’s condition slowly worsened in the two weeks following her second shot – before she abruptly crashed. In mid-May, Israel, which had vaccinated more of its population with mRNA vaccines than any other country, was reporting high rates of cases of vaccine-related myocarditis in young people.

But in the United States, vaccinations had just been opened for 12-15 year-olds, and the Centers for Disease Control was still playing down the myocarditis risk in young people. In a statement May 17, the day after Simone died, the CDC reported that it had found “relatively few reports of myocarditis to date,” that “most cases appear to be mild,” and that “rates of myocarditis reports [after vaccinations] have not differed from expected baseline rates.”

Simone’s physicians still have not confirmed to her parents that her vaccine caused her heart failure. But despite nearly a month of intense investigation, including an pathological examination of her heart – which was removed in the transplant – they have offered no other explanation.

“My fear is that we’ll never know what happened to Simone,” her father, Kevin Scott, said Sunday night. “[The vaccine] is a coincidence that is too big to ignore.”

“I do suspect it was the vaccine,” Kraimer said. “If it wasn’t direct, it played a role.”

Simone had been a healthy and driven young woman, her only notable illnesses a bout of pneumonia when she was an infant and a second in high school. She told her mother in sixth grade that she wanted to go to Northwestern, and six years later she applied early to the university and was accepted.  (Her Twitter account features a picture of her, smiling widely and wearing a black Northwestern sweatshirt, with the tweet, “When you get into your dream school!!”)

“She was a very goal-oriented person,” Kraimer said. “She was very, very disciplined.”

That discipline extended to her attitude toward Covid. She always wore masks and followed Northwestern’s sometimes onerous rules about testing when the school allowed its first-year students on campus in January.

Despite its Covid restrictions, the school was everything she hoped, her mother said. She produced stories for the school’s in-house television network and quickly made friends. “She was a Wildcat [the Northwestern mascot] through and through,” Kraimer said. “She bled purple.”

And when Illinois opened vaccinations to younger people, she quickly made an appointment to get hers.

“She took it upon herself to get vaccinated,” Kevin Scott said.

But she suffered serious short-term side effects after her first Moderna dose on April 3 and never fully recovered, her parents said.

Throughout the month of April she had a cough and stuffy nose and felt fatigued. Simone checked in with her mother, who lived outside Cincinnati, nearly every day, and Valerie encouraged her to go to a doctor.

But neither Simone nor her mother ever considered whether the vaccine might be behind her symptoms, Kraimer said. “We thought it was either allegories or a sinus infection.”

So on May 1, as scheduled, Simone received her second vaccination. This time she had fewer immediate side effects.

But when she flew home to surprise her mother for Mother’s Day, Sunday May 9, Kraimer noticed she seemed tired. And she told her mother she’d had repeated nosebleeds. Kraimer told her she needed to make an appointment with a doctor.

Back in Illinois on Wednesday, May 12, she did, but the visit was virtual and Simone forgot to mention that she’d noticed swelling the day before in her lymph nodes. The physician told her she probably had allergies.

The next day, she had a low fever and went to Northwestern’s student health clinic. Tests for mononucleosis, influenza, Sars-Cov-2, and other viruses were negative. A doctor noted Simone’s heartbeat was irregular but discharged her, telling her she should go to the emergency room if the problem worsened, Kraimer said.

The following day she’d added a sore throat to her list of symptoms and went back to the health clinic. By now Kraimer was concerned enough to insist on having Simone FaceTime the visit. She was told she might have a viral infection, given an anti-viral prescription, and again sent home.

By Friday night she was suffering severe fatigue. Still, her parents assumed she was simply rundown and sick, especially since she had now been seen three times in three days. “People do get sick, and you get some rest, and you sleep, and you get through it,” Kraimer said.

That changed on Sunday, May 16. Simone texted her father she was too dizzy to get out of bed or eat. Now seriously concerned, her parents decided to take action. Her mother packed a bag and began the drive from Ohio to Illinois, while her father contacted Northwestern’s campus police and asked them to check on her. After initially refusing, the police eventually did.

When Valerie Kraimer arrived at North Shore Hospital in Evanston on Sunday night, she was escorted into a waiting room. “That’s when I knew things were not right,” she said.

A doctor appeared, telling her that her daughter had gone into heart failure as she was being transported to the hospital and needed immediate surgery. “They said her heart was not functioning and they needed to insert a balloon pump to get it working.”

But the surgery failed. The next day, Simone was placed on ECMO, a heart-lung bypass. Nearly a month of increasingly desperate medical procedures followed. On May 20, with a transplant looming, she was moved to Northwestern Memorial, the university’s primary teaching hospital and among the top medical centers nationally.

Simone had a breathing tube and was sedated most of the time, but occasionally doctors lightened the sedation enough for her to text her parents. “Am I going home with you?” she asked.

On Sunday, May 23, Simone’s physicians told her parents that her heart did not seem to be recovering on its own and a transplant was her best option. “We didn’t have much choice,” Kraimer said.

She had the transplant that night and nearly died at least once. Ultimately, her new heart did begin to pump.

But her lungs had been severely damaged, and the immunosuppressive drugs necessary for her to avoid rejecting the transplant led to severe lung infections. After a few hopeful days, her prognosis dimmed. Her parents never lost hope, but on the morning of Friday, June 11, her doctors told them that they could no longer control her blood pressure and that they should come to say goodbye.

“We just all sat there and we watched and held her hand and rubbed her feet, and we had the chaplain come,” Kraimer said.

At 11:19 a.m., Simone Scott died. She was 19.

Kraimer and Kevin Scott repeatedly asked whether the hospital intended to report Simone’s case to VAERS, the federal system to report vaccine side effects. Doctors did not seem particularly interested in doing so for most of the time Simone was there, Kraimer said.

“We kept asking if they did and nobody could tell us if they did,” Kraimer said. “It was just a runaround.” Finally, the day before Simone died, a physician’s assistant promised to report the case.

With their daughter gone, Kraimer and Kevin Scott are now hoping that her story will – at the least – raise awareness of the potential risks of the Covid vaccines.

“I never knew that there was a risk for something as serious as this,” Kraimer said. “I would have wanted to know.”

In the meantime, they are left to mourn the loss of her only child.

On May 12, four days before Simone collapsed, Northwestern required all its students – with very limited exceptions – to be vaccinated for the fall 2021 term.