In a heartbreaking turn of events, James and Sophie Rushby’s one-year-old daughter, Ottilie, has been diagnosed with high-risk neuroblastoma, a rare and aggressive form of cancer. What began as a minor concern—a small lump on her head—quickly escalated into a life-altering diagnosis following a CT scan. The family was utterly unprepared for the shocking revelation that Ottilie has a large tumour that had already metastasised to her skull, spine, and bone marrow.
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The alarming journey started in May when James and Sophie noticed the lump on Ottilie’s head. They brought her to a medical professional, and within a matter of hours, they received life-changing news. “Within half an hour, we were pulled into this private room… and [the specialist] told us that Ottilie had a large tumour growing on the side of her head,” James recounted during an interview with the BBC.
The couple was devastated. James described the moment as “a complete bolt out of the blue.” Until that point, Ottilie had led a seemingly normal life without any apparent symptoms or discomfort. The diagnosis shattered their world; a healthy little girl was suddenly facing a grave illness.
Following the initial diagnosis, the family was hastily transferred to a specialist unit at Nottingham’s Queen’s Medical Centre. In the subsequent week, the Rushbys found themselves enduring one of the most challenging periods imaginable. “Ottilie was put through so many tests and procedures, and she had five general anaesthetics in five days, MRI scans, surgery to her head for a biopsy,” James explained. The situation turned dire when they received confirmation from the oncologist that it was indeed cancer.
The grim prognosis revealed that the cancer originated in Ottilie’s kidney and had spread through her bone marrow to her spine and head. “We were just in pieces to have all this information thrown at us when just two days earlier we were at home living a normal, happy life,” James reflected.
In light of her diagnosis, Ottilie is set to undergo an extensive treatment plan spanning 12 to 18 months. This plan includes chemotherapy, surgical interventions, blood transfusions, stem cell transplants, radiotherapy, and immunotherapy. Unfortunately, the family has been informed that Ottilie’s chances of survival under her current treatment regimen range from 30% to 50%. In a desperate search for hope, James has his sights set on a vaccine trial at Memorial Sloan Kettering Cancer Center in New York, which they hope to join after finishing the UK treatment.
James revealed that Ottilie’s intensive chemotherapy commenced on May 21 and consists of a rigorous 70-day cycle. Each cycle includes three to four days of chemotherapy, followed by a similar period of recovery. Despite the ongoing treatment, Sophie noted that Ottilie appears surprisingly cheerful and active, which complicates the family’s emotional response. “She’s up and running around, laughing and playing… but obviously, she is really poorly,” Sophie stated.
Adding to the complexity of their situation is the couple’s five-year-old son, Archie. The parents feel the pressure of maintaining a sense of normalcy for his sake. “You don’t have the time really to fall apart. You have to have it together for the kids,” Sophie added, underscoring the emotional toll the experience has taken on the family.
In light of the overwhelming medical costs and the uncertainty that lies ahead, James and Sophie have initiated a GoFundMe campaign to assist with their expenses. As of early June, they’ve successfully raised over £60,000 out of a target of £300,000.
In a time filled with uncertainty, the Rushby family is rallying around their daughter, praying for a miracle while also preparing for the demanding journey ahead. For those wishing to support the Rushby family during this difficult time, contributions can be made through their GoFundMe page. Each donation brings them a step closer to securing the necessary treatment for Ottilie and the hope of brighter days ahead.