2023-10-22 12:05:00
Alyssa, a second grader, felt slight back pain. Initially, she saw a chiropractor to alleviate her pain, but her condition quickly deteriorated, changing her entire life.
“She couldn’t sit up because the pain was so bad,” said Kylie Hann, Alyssa’s mother.
The family quickly made the decision tobring to Flinders Medical Center for further examination. Although the results showed a low level of platelets in Alyssa’s blood, all other tests appeared normal, and she was allowed to leave the hospital (source 1). However, the pain returned with terrifying intensity later that night.
“My child was in excruciating pain for 15 hours and no matter what painkiller we gave him, it didn’t make any difference,” Ms Hann said.
Alyssa struggled to breathe, and she was admitted in intensive care, where she was intubated under general anesthesia. The results of the medical examinations ultimately revealed a shocking reality: Alyssa suffered from a rare blood disorder, hemophagocytic lymphohistiocytosis (HLH), in addition to a acute myeloid leukemia. This double curse has transformed the girl’s once active life into a fight for survival. Hemophagocytic lymphohistiocytosis (HLH) is a rare disorder, which causes impairment of the immune system in infants and young children. In many cases, patients have an underlying immune disease, although in some cases the underlying cause remains unknown. Typical symptoms of the disease may include swollen lymph nodes, an enlarged liver and spleen, fever and a predisposition to recurrent infections.
A disrupted life
Alyssa, who worked part-time at a winery and was just learning to drive, will now have to endure two cycles of chemotherapy. Her daily life has radically changed, as she will be hospitalized for a month. Simple activities, like going to the bathroom, became major challenges for Alyssa. The family also received the difficult news that Alyssa would have to travel to Sydney to a bone marrow transplant.
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