A four-year-old boy has been diagnosed with a rare and aggressive brain tumor after exhibiting unsteady walking at his nursery. Raffi Starkowitz began leaning to one side in March 2025, prompting his parents, Neil and Nicky Starkowitz, to seek immediate medical attention. An emergency MRI scan revealed a mass in his brain, leading to a ten-hour surgery at Great Ormond Street Hospital to remove the tumor.
The diagnosis confirmed that Raffi had group 3 large cell anaplastic medulloblastoma, a particularly rare form of brain cancer. Following the surgery, he underwent multiple rounds of chemotherapy and radiotherapy. Tragically, during this challenging time, Nicky Starkowitz was also diagnosed with stage three breast cancer and has begun her own treatment journey.
Nicky described the moment they received Raffi’s diagnosis as devastating. “I felt like I had been hit by a train when Raffi got his cancer diagnosis,” she said. The family had noticed Raffi’s unsteady gait but initially attributed it to typical childhood clumsiness. A call from his nursery highlighted the issue, leading them to consult their general practitioner.
“The GP was unsure what the issue might be and recommended that we go to A&E,” Nicky explained. After a blood test returned normal results, a video showing Raffi walking normally raised enough concern for doctors to order an MRI scan. “That is when things went downhill quickly,” Neil added.
The surgery to remove the tumor was deemed successful, with doctors reporting that they had excised the entire mass. However, just five days later, the family was informed that Raffi’s condition was indeed cancerous. Nicky reflected, “Nothing prepares you for the moment you are told that your child has cancer.”
Following the surgery, Raffi underwent two rounds of chemotherapy, only to discover that the cancer had spread. In June 2025, he commenced six weeks of radiotherapy. By September 2025, a follow-up scan revealed no visible signs of disease, offering the family a glimmer of hope amidst the turmoil. Nicky remarked, “When his scan came back clear, that was the best news we could have hoped for.”
Despite this positive development, the family continues to grapple with the dual challenges of cancer. Nicky is currently undergoing six months of chemotherapy, followed by radiotherapy and hormone treatment. “Luckily, there is a huge amount of treatment available for me, but for Raffi, there is not,” she said, emphasizing the lack of available preventative treatments in the UK.
To seek more options for Raffi, the family began exploring treatment opportunities abroad. They discovered a clinical trial at Penn State Children’s Hospital in Hershey, Pennsylvania, which is testing difluoromethylornithine (DFMO) for high-risk medulloblastoma. The Starkowitz family is now working to raise £300,000 to cover the costs associated with the trial, including treatment, travel, and accommodation.
Neil explained their proactive approach, stating, “We wrote to every hospital in America that is part of this trial, and Penn State replied, offering Raffi a place.” The family hopes to travel to the United States at the end of January 2026 to meet the medical team and begin treatment.
As they navigate this challenging journey, the Starkowitz family remains focused on Raffi’s health and well-being. They invite others to support their cause as they work to secure the necessary funds for this critical treatment.
