13-year-old dies from COVID-19, her mother's plea to the community

MILWAUKEE (CBS 58) -- A family is mourning the loss of a 13-year-old girl to COVID-19 and they want her story to teach people not only about the dangers of the virus, but about the need to come together and care more about others.

Katie Pape fought to keep mask mandates in schools and in the community. Her daughter, Bella, was born with a life-threatening condition and doctors said if Bella got COVID-19 she wouldn't survive. They were right.

Bella spent her life fighting for time.

"We really took every day and tried to make it the best day we could," Katie Pape said. "And did not take any day for granted."

Bella was born with Kabuki Syndrome, a genetic condition, and her case was severe. She spent months of her life in the hospital, endured heart surgery, chemotherapy, even a liver transplant.

It would be enough to keep most people down, but not Bella.

"She would make you laugh constantly," Pape said. "She cared about others deeply and she just honestly was my soulmate. She was such a ray of sunshine."

Because of all her health problems, doctors said if Bella got COVID-19 she would likely die. So Katie Pape kept her family isolated.

She also spoke out at Cedarburg school board meetings, pleading for the district to keep mask mandates in place. She talked to CBS 58 in April of last year at one of those meetings.

"If we were truly all in this together, we would be caring and we would be wearing masks to protect each other. It's a simple, easy thing to do," Pape told CBS 58 at the time.

Cedarburg made masks optional for the 2021-2022 school year. Katie Pape pulled her daughter from school. 

"It was really crushing," Pape said. "It was the first time I felt like we didn't have the whole community behind us."

Bella and her family got vaccinated and always wore masks. But it wasn't enough, and three weeks ago, a family member tested positive and then so did Bella.

"At first I really thought it was going to be ok," Pape said. "She was doing well. The last day, before she was intubated, we had a wonderful day together where she was spunky and happy and we laughed and joked and just talked all day."

Bella died on Valentine's Day. The medical examiner's report shows the immediate cause of death was COVID-19.

"I've never seen her suffer like that and be in so much agony and fear, and I just wouldn't wish that upon anyone," Pape said. "And I feel like if our school board or community members that don't believe taking these precautions could've seen that, that they just might feel differently."

Doctors told Pape Bella had more time if it wasn't for COVID.

So now, Pape will continue her fight. She'll speak to the school board Wednesday, hoping to change people's minds about wearing a mask or taking other precautions to prevent the spread of COVID.

"I just think we all need to look to her life and think about what you can do to honor her, and that would be caring for others, looking out for others," Pape said.

Despite the ME report stating Bella died from COVID, Pape is frustrated that when the district notified families about Bella's death, it said she died from a lengthy illness.

No one spoke out against what Pape had to say at the Cedarburg School Board Meeting Wednesday night as she went before the board saying she warned them something like this might happen.

"My daughter would still be alive today if she had not gotten COVID," said Pape, "I'll say that again. My daughter died from COVID."

Pape said a letter was sent without permission from her to parents saying Bella died from "a life-long battle with multiple medical conditions and complications".

"That was quiet frankly dishonest about her cause of death and it was shameful that you basically pushed it out to try and control and spin your narrative," said Pape.

She reminded the board she spoke about this last year.

"You ignored me then and completely lacked any empathy or compassion," said Pape.

She said the district didn't do enough to take proper COVID-19 precautions to protect kids like her daughter.

"If you could've done anything to prevent any family in this district from going through that you should've," said Pape, "no parent should have to watch their child be in such fear and agony."

After Pape spoke, Board President Rick Leach did apologize for the family's loss, something that's atypical in public comments of board meetings.

We tried to talk to Bella's school principal, Tony DeRosa, who's name was on the copy of the letter Pape sent to CBS 58 News.

He deferred to the district.

The board did not return requests for comment.

There will be a service for Bella on Monday in Grafton. At some point in the spring, they hope to have an outdoor celebration. That's what Bella wanted. She loved a party.

There is a GoFundMe to help with those expenses, you can donate here: Fundraiser for Katie Pape by Abby Janowiec : Forever with Us: Support for Bella's Family (gofundme.com).