Croatian girl seeking leukemia therapy at CHOP dies

Posted: March 21, 2013

Nora Situm, the 5-year-old Croatian girl whose homeland raised money for her to seek experimental leukemia therapy at Children's Hospital of Philadelphia, died early Wednesday while the tailor-made treatment was still being produced.

"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," the hospital said in a statement. "During the time Nora was in our care we were in awe of the tremendous courage and spirit displayed by her and her parents."

Early this month, doctors announced that they had collected Nora's T cells, the immune cells that form the basis of the gene therapy. However, the process of multiplying the cells and genetically modifying them in the lab takes more than a month.

"While we were all hopeful that Nora might benefit from the T-cell therapy trial, unfortunately she passed away before she was able to receive T-cell therapy," the hospital said.

Nora had relapsed twice despite conventional chemotherapy-based treatment of her acute lymphoblastic leukemia. Unchecked, the disease can rapidly progress and be fatal within weeks.

Hundreds of messages of condolence were posted on the hopital's Facebook page and Nora's page beginning about 8:30 a.m. Wednesday.

Some residents of Nora's financially struggling country thanked the hospital for doing everything possible to help the child. The tenor of their messages was in contrast to criticism leveled at the hospital in February, when a misunderstanding over the cost of the treatment led to the mistaken impression that the price had been jacked up at the eleventh hour. Nora's mother Giana Atanasovska later apologized for the confusion.

Exactly how much of the estimated $600,000 treatment costs have been spent, and how much may be refunded, is not yet clear. "We have not gotten to a place where we've looked into that piece yet," hospital spokeswoman Rachel Salis-Silverman said.

Although still very early in clinical use, the T cell therapy has been remarkably effective in more than a dozen adults and children for whom researchers have released results.

"We hope that her family, her supporters, and the people of Croatia find comfort in knowing they did all they could for this remarkable little girl," the hospital said.

Contact Marie McCullough at 215-854-2720 or mmccullough@phillynews.com.

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