A young Croatian girl who was at the center of a controversy at the Children’s Hospital of Philadelphia died on Wednesday.
Nora Situm, 5, suffered from acute lymphoblastic leukemia, a cancer of the white blood cells characterized by excess lymphoblasts. The cancer causes malignant, immature white blood cells to multiply and overproduce in the bone marrow.
Her condition was such that she needed special treatment at CHOP to save her life. As Situm’s story spread throughout her home country, Croatians rallied together to help raise around $600,000 for her to travel to America and receive the treatment, according to the Atlantic Wire.
Controversy erupted however after a Croatian newspaper reported that CHOP raised the price for treatment to around $200,000 more after the fundraisers reached their goal. The report prompted Nora’s supporters to flood the CHOP Facebook page with angry comments.
According to the Atlantic Wire however, the Croatian newspaper failed to mention that the extra $200,000 was the estimated cost of continuing treatment over the next few years. Nora’s mother, Dana Atanasovka Situm told the Philadelphia Inquirer that the entire ordeal was a “misunderstanding” and urged her Croatian supporters to no longer bash the Children’s Hospital.
A CHOP spokesperson also responded to the controversy, claiming that the hospital “estimates the costs of treatment in advance and seeks payment at the time treatment begins.” The spokesperson also claimed that the hospital does not charge for follow-up clinical treatment at the time of initial treatment and that it would never charge if the child was not further treated at CHOP.
With the confusion cleared, Nora’s family flew her out to Philadelphia in February. The hospital planned for Nora to undergo an experimental gene therapy developed by researchers at the University of Pennsylvania to fight her leukemia. On Wednesday, however, the hospital announced that Nora passed away before she was able to receive the therapy.
"We are very sorry for the loss of Nora Situm, and express our deepest sympathies to her parents, family, and many friends ...and supporters in Croatia," said a CHOP spokesperson. "During the time Nora was in our care we were in awe of the tremendous courage and spirit displayed by her and her parents."
The Philadelphia Inquirer reports that the hospital announced earlier this month they had collected Nora's T cells, which form the basis of the gene therapy. However, according to the Inquirer, the process of multiplying the cells and genetically modifying them takes more than a month.
After her death was announced, thousands of supporters from across the world went to Nora's Facebook page to send their condolences.