A four-year-old boy named Raffi Starkowitz has been diagnosed with a rare and aggressive brain cancer after experiencing unsteadiness while walking at nursery. This alarming symptom prompted his parents, Neil and Nicky Starkowitz, to seek immediate medical attention. Following an emergency MRI scan in March 2025 at Great Ormond Street Hospital, doctors discovered a mass on Raffi’s brain.
The diagnosis revealed that Raffi has group 3 large cell anaplastic medulloblastoma, a type of brain cancer known for its aggressiveness. His treatment plan included an extensive 10-hour surgery to remove the tumor, alongside multiple rounds of chemotherapy and radiotherapy.
Family’s Dual Health Crisis
As Raffi faced his own health struggles, his mother Nicky was diagnosed with stage three breast cancer, requiring a mastectomy and reconstruction. She is currently receiving chemotherapy treatment. Nicky, a nurse from Barley in Hertfordshire, expressed the emotional toll the situation has taken on the family.
“I felt like I had been hit by a train when Raffi got his cancer diagnosis,” she said. “We thought his walking unsteadily was strange, but nothing out of the ordinary. When we got the news, it felt like someone had punched us in the chest.”
The journey to diagnosis began when Raffi’s nursery alerted his parents about his unusual walking patterns. Initially dismissing it as a minor issue, they took him to their family doctor, who advised them to go to A&E. After normal blood test results, a video showing Raffi walking normally caught the doctor’s attention, leading to the recommendation for an MRI.
Nicky recalled the moment the gravity of the situation became clear: “When I was in the MRI room with Raffi, I knew it was serious when they came in to give him contrast.”
Ongoing Treatment and Future Prospects
Following surgery, Raffi underwent two initial rounds of chemotherapy, which indicated the cancer had spread. He began six weeks of radiotherapy in June 2025. By September, scans showed no visible signs of disease, providing a glimmer of hope for the family.
“That was the best news we could have hoped for,” Nicky said of the clear scan results. “It gave us hope and something to grasp onto.”
Despite this progress, the family faces ongoing challenges. With no preventative treatments available for Raffi in the UK, they began exploring options abroad. Raffi has been accepted into a two-year trial program at Penn State Children’s Hospital in Hershey, Pennsylvania, where researchers are testing difluoromethylornithine (DFMO) for treating high-risk medulloblastoma.
Neil explained their proactive approach: “We wrote to every hospital in America that is part of this trial, and Penn State replied to us, offering Raffi a place.” The family aims to raise £300,000 to cover treatment costs, travel, and accommodation.
Nicky highlighted the disparity in treatment options: “Luckily, there is a huge amount of treatment available for me, but for Raffi there is not.” This stark reality drives the family to seek every possible avenue for Raffi’s care.
As they prepare for their journey, Neil stated, “We are hoping to head out there at the end of January 2026 to meet the team.” The Starkowitz family is determined to support Raffi in his fight against cancer, demonstrating resilience in the face of overwhelming challenges.
For those wishing to contribute to Raffi’s treatment, donations can be made through various channels set up by the family.
