Katie Charles, aunt of 11-week-old Freya Charles from Lichfield, shared a poignant account of her niece’s battle against a rare and aggressive brain tumour. What initially appeared to be flat head syndrome was soon diagnosed as a grade four Atypical Teratoid/Rhabdoid Tumour (AT/RT), a highly uncommon and fast-growing cancer.
AT/RT is an embryonal tumour originating from stem cells that normally help form the embryo but remain in the brain after birth. These cells can turn cancerous, leading to rapidly developing tumours like Freya’s. The first warning sign was a sudden increase of three centimeters in her head size over just a few days, identified during a routine maternity check in June. Alarmed by this, Freya’s parents, Adam and Lydia Charles, rushed her to Birmingham Children’s Hospital where she has remained ever since.
Katie described how Freya’s symptoms evolved rapidly—her eyes became displaced and difficult to control, she appeared vacant and cross-eyed, and her head grew larger day by day. The beloved baby stopped smiling and even experienced hearing difficulties. Within three days of hospitalisation, Freya underwent urgent neurosurgery lasting around nine hours, with surgeons removing an estimated 80 percent of the tumour.
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Since then, Freya has had two additional surgeries to drain fluid and place a chemotherapy administration tube. Her ongoing treatment includes chemotherapy, which unfortunately stunts growth, and she may require lifelong care even if the cancer goes into remission.
If current therapies prove insufficient, alternative treatments being trialled in the US and Canada might become necessary. To support the family, Katie started a GoFundMe campaign to help cover living costs and potential overseas medical expenses, as both parents are unable to work.
The Charles family is devastated by the diagnosis, struggling to come to terms with the fragile state of their infant’s health. Katie expressed her heartbreak, saying this is the saddest thing she’s encountered in her 31 years. Despite their pain, the family courageously shares Freya’s story to raise awareness of this rare cancer and urges vigilance for early symptoms.
Katie reflected on the tragedy of missing early signs, emphasizing the difficulty of recognizing pain in a newborn. She hopes that increased awareness can help others spot symptoms sooner and provide timely intervention.