For Raffi Starkowitz and his family, life changed dramatically in March 2025 when a small change in the four-year-old’s walking led to the discovery of a serious brain tumour.

Raffi had been a happy, energetic child who enjoyed playing with trucks and trains, kicking a ball and helping his parents around the house. But one day, staff at his nursery noticed that he appeared unusually unsteady on his feet. His parents initially thought the change might be related to an ear infection or a minor illness. Instead, medical examinations and an MRI revealed a large tumour in the cerebellum, the part of the brain that plays an important role in balance and coordination. 

The situation deteriorated rapidly. Raffi was transferred by ambulance to Great Ormond Street Hospital in London, where doctors performed emergency surgery. Reports from the family say the operation lasted around 10 hours, and surgeons were able to remove the tumour. However, testing revealed that Raffi had Group 3 large-cell anaplastic medulloblastoma, an exceptionally rare and aggressive form of childhood brain cancer.

The diagnosis marked the beginning of a difficult treatment journey. Raffi underwent intensive chemotherapy, prolonged hospital stays and a six-week course of daily radiotherapy. The treatment brought serious side effects, including exhaustion, sickness, infections, hair loss and painful skin problems. Despite the physical strain, his family has described him as remarkably resilient, continuing to smile and play whenever he feels well enough.

There was eventually a moment of hope when follow-up scans showed no visible disease. But because Raffi’s cancer is considered particularly aggressive, his family remained concerned about the possibility of the disease returning. They began searching for additional treatment options beyond those available in the United Kingdom.

The family found an opportunity in the United States. Raffi was accepted into a two-year programme at Penn State Children’s Hospital in Hershey, Pennsylvania, involving DFMO, or difluoromethylornithine, in research involving children with high-risk medulloblastoma. The family launched a fundraising campaign to help cover treatment, medical monitoring, travel, accommodation and other expenses connected with the programme.

By November 2025, supporters had raised around £200,000, prompting the family to increase its fundraising target to £300,000 to help cover future treatment and educational support, as well as research into Raffi’s rare cancer.

But Raffi’s illness was not the only devastating diagnosis to hit the family.

While her young son was undergoing treatment, his mother, Nicky Starkowitz, was diagnosed with Stage III breast cancer. Nicky, a paediatric nurse and mother of three, underwent surgery and began her own course of chemotherapy and radiotherapy while continuing to support Raffi and his two sisters, Ella and Talya.

The family has therefore been forced to face two separate cancer battles at the same time — a situation that has placed enormous emotional and practical pressure on the household.

Yet throughout the ordeal, Raffi’s parents have continued to focus on the future. Their goal is simple: to give their little boy every possible opportunity to recover, grow up and enjoy the ordinary childhood experiences that were suddenly interrupted by his diagnosis.

The story has also inspired an extraordinary response from the community. Thousands of people have contributed to fundraising efforts, while friends and supporters have organised challenges and events to help the family meet the costs of Raffi’s treatment.

For Raffi’s family, the road ahead remains uncertain. But their determination has remained strong. After everything the four-year-old has already endured — from emergency brain surgery to intensive cancer treatment — his family continues to hold onto hope.

Their fight is ultimately about more than treatment. It is about giving Raffi the chance to return to being the energetic little boy who loved trucks, trains, football and helping his family — and, above all, giving him the future he deserves.

Sources: People