'Ray of Sunshine' 13-Year-Old With Rare Genetic Disorder Dies of COVID

A 13-year-old girl described by her mother as a "ray of sunshine" has died from COVID-19 complications at a hospital in Milwaukee.

Bella Pape from Cedarburg, Wisconsin, died on Monday. A report from the Milwaukee County Medical Examiner's office showed that her immediate cause of death was COVID-19, CBS 58 reported.

Bella was born with a genetic condition called Kabuki syndrome—a rare multi-system disorder characterized by distinctive facial features, delays in growth, varying degrees of intellectual disability, skeletal abnormalities and short stature. A variety of other symptoms have been documented and they can vary significantly from person to person.

The syndrome is caused by mutations in two genes called KMT2D and KDM6A. According to the National Organization for Rare Disorders, the incidence of Kabuki syndrome is unknown but has been estimated at between 1 in 32,000 and 1 in 86,000.

Bella spent much of her life in and out of hospital, undergoing heart surgery, chemotherapy and a liver transplant, and suffering sepsis and kidney failure.

"We really took every day and tried to make it the best day we could," the 13-year-old's mother, Katie Pape, told CBS 58. "And did not take any day for granted."

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

Doctors had told the family that if Bella contracted COVID-19, she would likely die because of her health problems.

As a result, the family did everything they could to prevent the 13-year-old from catching the virus, her mother said. They isolated as much as possible, got vaccinated and always wore masks.

Three weeks ago, one family member tested positive, however, and the virus spread through the group until it reached the 13-year-old.

"At first I really thought it was going to be OK," Katie 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."

But the girl's condition worsened and she had to be transferred to intensive care before succumbing to the disease on February 14.

"Out of all of her struggles—sepsis, liver transplant, kidney failure, all of it, pneumonias —I've never seen her suffer or be more scared than she was with these two weeks intubated," Katie Pape told TMJ4.

"It was just completely heartbreaking and I just wanted to do anything to take it away, and I wish it was me instead of her."

COVID-19 deaths in children are very rare. According to Wisconsin Department of Health Services data up to February 17, 10 people aged 19 and under have died as a result of COVID-19 complications in the state. In total, Wisconsin has recorded 11,701 confirmed COVID deaths.

Katie Pape said her family had made every effort to keep the 13-year-old safe from COVID-19, but she thought many people in the Cedarburg community were not acting with enough caution.

"We have always had such support from our community and this was one of the first times where I truly felt shocked at the lack of compassion," she said.

The mother said she hoped people would read about her daughter and think more about others who are more at risk.

"It's all in the attitude and if you refocus your thought process into thinking about others like Bella does, or did, it just seems so silly not to do that if it means sparing someone's life," Katie told TMJ4. "I mean, would you really want to know that you are possibly responsible for taking the life of someone as precious as my daughter?"

After the girl's death, a family friend, Abby Janowiec, set up a GoFundMe page to help the family with medical and funeral expenses. The page has already raised more than $9,000.

"Out of respect for Bella, please continue to take COVID seriously and do all that you can to protect yourself and others," Janowiec wrote.

A young girl in hospital
Stock image of a young girl in hospital. COVID deaths among children are extremely rare. In Wisconsin, people aged 19 and under have accounted for 10 of the state's 11,701 COVID deaths. iStock