Nicola Francis has had 20 operations since being born after she was diagnosed with a rare and aggressive tumour after falling and hitting her mouth when she was learning to walk
A little girl who sustained a mouth injury while learning to take her first steps was later diagnosed as a rare and aggressive tumour that causes painful growths in her jaw.
Nicola Francis, now five, suffered face swelling after the fall but a week after the incident her mother, Iveta Kosova, 40, noticed that the left side of her face remained swollen despite initial swelling going down. Initial doctors and dentist visits left Iveta without answers but after Nicola fell for a second time she was taken to Northampton Hospital.
There, doctors identified an unusual growth and a biopsy revealed a Giant Cell Tumour, a rare and aggressive condition. Nicola was referred to Great Ormond Street Hospital, where she underwent 20 operations to remove the tumour.
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However, the family remain uncertain about what treatment will work next. Iveta said: “When we got the diagnosis, I nearly died – I was so broken. I didn’t want to leave her side as I knew what was coming. Every seven weeks the tumour will grow back to the size of my fist.
“She has had more than 20 operations over the last few years. Right now, we don’t know what will happen next, we are currently in limbo and don’t know if there is a cure.”
Iveta recounted the traumatic series of events that began when her daughter Nicola, attempting to walk like any baby, took a fall: “Like every baby she tried to start walking and fell over, like you do. She hit her mouth, which started to swell up but half of her face went down after a week and the other half kept growing.
“I kept going to the GP and dentist but nobody knew what was going on, all while Nicola’s mouth kept getting bigger and bigger.”
Doctors eventually performed a biopsy and the results came back and said that Nicola had a giant cell tumour. Understanding the gravity of their situation, Iveta lamented: “It broke my world because I knew the next few years would be tough.”
Nicola’s care was escalated to a renowned facility: “Nicola was transferred to Great Ormond Street, London, in March 2020.The tumour continued to grow and every seven weeks, Iveta would undergo an operation to remove it. Then in 2020, Iveta started getting chemo injections into her leg to stop the tumours growing.”
Yet, their struggles continued with a relentless cycle of growth and surgery, Iveta said: “Every seven weeks, the tumour would grow to the size of my fist. They didn’t have a treatment so they just kept operating every seven weeks. Then they started injecting her with chemo to stop the tumours growing.”
For three years, Nicola’s tumours remained stable thanks to chemotherapy injections, but in July 2024, she had to cease treatment due to concerns that the chemo could begin to harm her body. Despite stopping the injections, the tumour persisted in growing, leading to Nicola undergoing 20 surgeries to remove it.
Iveta expressed that she and her family are facing uncertainty about the future and what treatments might be available. Nevertheless, Iveta described Nicola as a “happy” girl who adores attending school whenever she’s well enough.
Iveta said: “Nicola is a happy little girl who loves going to school when she is well enough. Her family and friends could not be prouder of her courage, but behind her smiles is a daily struggle—one that is emotionally, physically, and financially exhausting for her family. You wouldn’t even think that something was wrong with her, she is so happy. What is happening to her breaks my heart, it has been five years of ups and downs.”
Since Nicola’s diagnosis, Iveta has put her job on hold to provide care, and Nicola’s father has also had to take time away from work. The family have launched a GoFundMe campaign to help cover the costs of travelling to the hospital, to donate click here.
