Raffi Starkowitz, 4, was at nursery when he suddenly began feeling unsteady on his feet and leaning to one side
A little boy has been diagnosed with a rare brain cancer after he was spotted ‘walking unsteadily’ at nursery. Four-year-old Raffi Starkowitz was at nursery when he suddenly began feeling unsteady on his feet and leaning to one side in March 2025.
His parents Neil, 47, and Nicky, 46, took him to A&E and an emergency MRI scan showed he had a mass on his brain. The tot underwent a 10-hour operation to remove it at Great Ormond Street Hospital.
Raffi was diagnosed with a group 3 large cell anaplastic medulloblastoma – a rare and aggressive brain cancer – and he underwent multiple rounds of chemotherapy and radiotherapy. While Raffi was going through treatment his mum Nicky was diagnosed with stage three breast cancer and underwent a mastectomy and complete reconstruction – and is now undergoing chemotherapy.
Raffi’s current scans show no visible disease, but there is a high risk the cancer could return, and there are currently no preventative treatments available in the UK. Nicky, a nurse from Barley, Hertfordshire, said: “I felt like I had been hit by a train when Raffi got his cancer diagnosis.
“We thought his walking unsteadily was strange, but nothing out of the ordinary. We were still trying to cope and deal with the fact that he went downhill so quickly.
“At that point, it was a week prior when everything started to happen. When we got the news, we felt like someone had punched us in the chest and knocked all the wind out of us.”
Nicky and Neil were at their daughters’, Ella, 10 and Talya, seven, school when they got a call from Raffi’s nursery saying he was walking unsteadily. Initially, they thought it was nothing out of the ordinary, but they took Raffi to the GP to get checked.
Nicky said: “His GP said that they were unsure what the issue might be and recommended that we go to A&E. There, Raffi had a blood test that came back normal.
“We had shown the doctor a video of Raffi walking normally, and that is when the doctor recommended an MRI scan. Then things went downhill quickly.”
Neil, a project manager, said: “The surgery was successful, and they were able to remove the whole mass and not leave anything inside. Doctors had suspected that it was brain cancer, but at that stage they weren’t too sure.”
Five days later, an oncology consultant told Nicky and Neil the news they were dreading. Nicky said: “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.”
Raffi then underwent two initial rounds of chemotherapy, which showed that the cancer had spread. So Raffi started six weeks of radiotherapy in June 2025.
In September 2025, a scan showed there were no visible signs of disease, but Raffi continued with intensive radiotherapy. Nicky said: “When his scan came back clear, that was the best news we could have hoped for.
“He had responded to the treatment, which was a massive relief for us. It was an amazing moment; it gave us hope and something to grasp onto.”
But the family have had to deal with Nicky’s breast cancer diagnosis at the same time – and she is currently undergoing six months of chemotherapy, followed by radiotherapy and hormone treatment.
Nicky said: “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. That is when we started looking elsewhere; we didn’t want to leave anything to chance.”
There are currently no preventative treatments available in the UK. Raffi has been accepted onto a two-year trial programme at Penn State Children’s Hospital, Hershey, Pennsylvania, where they are trialling difluoromethylornithine (DFMO) to treat high-risk medulloblastoma, and his parents are raising £300k to cover the cost of treatment, travel, and accommodation.
In the UK, DFMO is currently used to treat high-risk neuroblastoma and has not been approved by regulatory bodies for use on other rare cancers.
Neil said: “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.
“We are trying to raise £300k, which will go towards any treatment, travel insurance, accommodation, and any future medical needs.”
You can donate to the family here
