A four-year-old boy named Raffi Starkowitz has been diagnosed with a rare and aggressive brain cancer after displaying unsteady walking at his nursery. This unsettling symptom prompted his parents, Neil and Nicky Starkowitz, to seek medical attention in March 2025, leading to a shocking diagnosis that would alter their family’s life.
During a routine day at nursery, Raffi suddenly felt unbalanced, leaning to one side. Concerned about his well-being, his parents took him to the emergency department, where an MRI scan revealed a mass on his brain. Subsequently, Raffi underwent a successful ten-hour surgery at Great Ormond Street Hospital to remove the tumor.
Diagnosis and Treatment Journey
Following the operation, doctors confirmed that Raffi had been diagnosed with group 3 large cell anaplastic medulloblastoma, a rare form of brain cancer. The young boy commenced multiple rounds of chemotherapy and radiotherapy, facing the challenges of his treatment head-on. In a tragic twist, Nicky Starkowitz was also diagnosed with stage three breast cancer around the same time, necessitating her own intensive treatment regimen.
Nicky described the moment they received Raffi’s diagnosis as heart-wrenching: “Nothing prepares you for the moment you are told that your child has cancer. When I was in the MRI room with Raffi, they came in halfway and gave him contrast. As a nurse, I knew that you only give contrast when you see something on the scan. From that point, I knew it was something serious.”
After two initial chemotherapy rounds, it became clear that the cancer had spread, leading to six weeks of radiotherapy beginning in June 2025. Despite the challenges, a scan in September 2025 showed no visible signs of disease, providing a glimmer of hope for the family.
Seeking Advanced Treatment Options
As they navigated Raffi’s treatment, the family faced the additional burden of Nicky’s health crisis. While she has access to a range of treatments, Raffi’s options remain limited in the UK. Nicky highlighted the stark reality: “Luckily, there is a huge amount of treatment available for me, but for Raffi there is not. There is no treatment available for him in the UK.”
In a bid to secure better treatment for their son, the Starkowitz family began researching alternative options. Raffi has since been accepted into a two-year trial program at Penn State Children’s Hospital in Hershey, Pennsylvania, where researchers are testing difluoromethylornithine (DFMO) as a potential treatment for high-risk medulloblastoma.
To facilitate this journey, the family is working to raise £300,000 to cover treatment costs, travel, and accommodation. Neil remarked on their determination: “We wrote to every hospital in America that is part of this trial, and Penn State replied to us, offering Raffi a place. We are hoping to head out there at the end of January 2026 to meet the team.”
As the Starkowitz family continues their fight against cancer, they exemplify resilience in the face of adversity, striving to secure the best possible future for their son. Donations to support their journey can be made through dedicated fundraising efforts, as they remain hopeful for improved outcomes and new treatment possibilities.
