Sofia's Journey
Sofia was a bright, energetic, and vivacious little girl—full of laughter, curiosity, and a deep love for her family, friends, school, and community. At just five years old, she was thriving in every way. But in November 2023, our world changed forever.
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It began suddenly. Sofia felt unwell, and within days, she experienced paralysis in her left arm and weakness in her leg. With a five-week-old baby, Bea, and our three-year-old, Freddie, at home, we were devastated when doctors at Medway Hospital discovered a large mass in her brain.
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She was rushed to King’s College Hospital. After emergency steroids and surgery, most of the mass was removed. Initially, it looked benign—but days later, we received the devastating news: it was malignant.
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At The Royal Marsden, Sofia was diagnosed with a rare, high-grade glioma—difficult to categorise and almost unheard of in children. Despite everything, Sofia stayed brave. Just before Christmas, she began intensive radiotherapy. Each day we travelled to Surrey for treatment, and each morning she insisted on going to school. She adored her teachers and classmates and didn’t want to miss a thing.
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When radiotherapy ended, Sofia underwent two major procedures: fertility preservation surgery and insertion of a Hickman line for future treatments. As always, she faced it with courage—returning to school the next day, laughing with her friends about her ovary now being in a freezer in Oxford and squeaking her Hickman line like a dolphin.
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By the new year, Sofia began chemotherapy. But her next scan showed early signs of tumour progression—an uncommon and crushing result. Then came a glimmer of hope: Sofia was accepted onto a Cancer Research UK trial for a targeted drug called Larotrectinib. Amazingly, it worked. The tumour shrank, and we enjoyed a relatively calm summer filled with joy, family, and a few hospital stays.
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But in late November 2024, things changed again. While playing with Freddie, Sofia suddenly lost feeling in her leg. Although it returned quickly, she began having frequent, lengthy seizures in her arm and leg. Despite clear scans, we knew something was wrong.
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On Christmas Eve, she returned to King’s with her dad, Rob, where doctors diagnosed focal epilepsy. They worked tirelessly to control the symptoms. Sofia, as ever, was brave and smiling, even through the holidays.
By January 2025, her leg had weakened, and she began using a wheelchair. But her spirit never dimmed—she remained our determined, joyful Sofia.
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In February, during the school’s Numbers Day, Sofia set her sights on winning a prize. She decorated a box, carefully adjusting it to fit her wheelchair. Though she looked disappointed at first, she beamed as she said, “I actually did win.” That was her last day at school.
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A week later, we were told the cancer was spreading rapidly. It explained her fatigue and nausea. Still, she was determined to attend her final school disco. Watching her rise from her wheelchair and dance for a full hour, despite being so unwell, was one of the proudest moments of our lives.
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The next six weeks were a blur of daily nursing visits, regular support from The Marsden, and growing medication. Through it all, Sofia showed extraordinary courage.
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On 31st March 2025, Sofia passed away at home, with Mum and Dad by her side.
We miss her every single day.
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