The seemingly innocent sight of a four-year-old boy walking unsteadily at his nursery led to a devastating diagnosis of a rare and aggressive brain tumour, sparking a family's battle against two cancers and a desperate race to raise £300,000 for life-saving treatment.
A Mother's Instinct and a Sudden Decline
In March 2025, Raffi Starkowitz was at his nursery when staff noticed he had become suddenly unsteady on his feet, leaning noticeably to one side. His parents, Neil, 47, and Nicky, 46, were collecting their daughters from school when they received the call.
Although initially not overly concerned, they decided to take Raffi to their GP as a precaution. Nicky, a nurse from Barley, Hertfordshire, explained that the GP was unsure of the cause and recommended a trip to A&E.
"We thought his walking unsteadily was strange, but nothing out of the ordinary," Nicky recalled. "We were still trying to cope and deal with the fact that he went downhill so quickly."
The Devastating Diagnosis
At the hospital, initial blood tests came back normal. It was after showing doctors a video of Raffi's unusual gait that an emergency MRI scan was recommended. For Nicky, a medical professional, the situation became terrifyingly clear during the scan.
"When I was in the MRI room with Raffi, they came in halfway and gave him contrast," she said. "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."
The scan revealed a mass on Raffi's brain. He underwent a gruelling 10-hour operation at Great Ormond Street Hospital to remove the tumour. Five days later, the family received the crushing news: Raffi had group 3 large cell anaplastic medulloblastoma, a rare and aggressive form of brain cancer.
"Nothing prepares you for the moment you are told that your child has cancer," Nicky shared. "I felt like I had been hit by a train when Raffi got his cancer diagnosis."
A Family's Dual Battle and a Race for Treatment
Raffi's fight was just beginning. He endured multiple rounds of chemotherapy and, when it was discovered the cancer had metastasised, six weeks of radiotherapy in June 2025.
In a cruel twist of fate, while Raffi was in treatment, his mother Nicky was diagnosed with stage three breast cancer. She has since undergone a mastectomy and complete reconstruction and is currently undergoing chemotherapy.
By September 2025, Raffi's scans showed no detectable traces of the disease. However, the risk of recurrence remains high. The family faced another harsh reality: there are currently no preventative treatments available in the UK for Raffi's specific condition.
"Luckily, there is a huge amount of treatment available for me, but for Raffi there is not," Nicky stated. "There is no treatment available for him in the UK. That is when we started looking elsewhere."
The family's search led them to a two-year trial programme at Penn State Children's Hospital in Hershey, Pennsylvania, which is trialling a drug called difluoromethylornithine (DFMO) for high-risk medulloblastoma. Raffi has been accepted onto the trial.
His parents are now on a mission to raise £300,000 to cover the costs of treatment, travel, and accommodation, hoping to travel to the US by the end of January 2026. Neil, a project manager, said, "We are trying to raise £300k, which will go towards any treatment, travel insurance, accommodation, and any future medical needs."
