New Delhi: By the time she turned 19, Lakita Frida faced bone cancer, lost a limb, developed a life-threatening bone marrow disorder — and survived them all.On the eve of International Childhood Cancer Day, the story of the Kenyan teenager treated in India drew attention to Li-Fraumeni syndrome, a rare inherited condition that significantly increases the risk of developing multiple cancers from childhood. “I was five when my dad passed away from cancer,” Frida, who lives in Nairobi, told TOI. “Then when I was 10, I got cancer.”What began as sharp pain in her right knee during childhood sports was diagnosed as osteosarcoma, an aggressive bone cancer. With a family history of sarcoma in her father and aunt, doctors at Medanta Hospital in Gurgaon suspected a genetic predisposition. A PET-CT scan confirmed the tumour in her right femur and genetic testing revealed a mutation in the TP53 gene, confirming Li-Fraumeni syndrome.She underwent multi-agent chemotherapy followed by limb salvage surgery, during which her knee joint was replaced with a titanium implant. After further chemotherapy, she returned to school and remained stable for nearly two years.In 2020, the cancer returned. “There was nothing else they could do. They had to amputate the full leg,” she said. She underwent additional chemotherapy and a bone marrow transplant the same year. The first transplant was autologous, using her own stem cells. She spent nearly 100 days in hospital recovering.In 2022, she developed myelodysplastic syndrome, a serious bone marrow disorder in which immature blood cells fail to develop properly. This time, she required an allogenic bone marrow transplant from her mother. The procedure was successfully performed.Dr SP Yadav, senior director of paediatric bone marrow transplant and medical oncology at Medanta, said Li-Fraumeni syndrome is caused by germline mutations in the TP53 tumour suppressor gene and carries an extremely high lifetime risk of developing multiple cancers. “In her case, early genetic diagnosis allowed us to adopt an aggressive and closely monitored treatment strategy. When she developed myelodysplastic syndrome, a bone marrow transplant became crucial. Managing such patients requires multidisciplinary care and lifelong surveillance,” he said.Today, Frida walks with crutches, saying she finds them more comfortable than a prosthetic limb. She is pursuing A-levels in psychology, sociology and literature and plans to begin university soon. While she can no longer run or do gymnastics, she still dances occasionally and paints regularly.Her message to other young patients is direct and simple: “I know some days are really hard — the hospital, the medicine, the tiredness. But you are braver than you think. Even when you feel scared, you are still strong. You are not just a patient. You are a hero.”Now five years on from her first transplant and in remission since 2022, her story stands as one of persistence against a rare genetic disorder that often brings repeated blows.
