Recalling to the JC the days leading up to the diagnosis, Nicky, a paediatric nurse, said she noticed unusual signs. "Compared to how a lot of kids present, Raffi was very active - he was playing rugby at just three years old. But the day before we went to the hospital, he seemed a little off, a bit wobbly, falling around. His motor skills looked off, and he wasn’t eating properly."
The situation quickly escalated. "The next day, he went to nursery, and they said he looked drunk on his feet. I thought it might be an ear infection, but when the GP saw him, he immediately suspected something more serious and sent us to Northwick Park Hospital," she recalls.
There, Raffi’s coordination was assessed by colleagues of Nicky’s, and an MRI revealed a large lesion in his brain. He was transferred to Great Ormond Street Hospital, where doctors discovered Raffi had hydrocephalus - fluid build-up in the brain that was causing the pressure and symptoms. Emergency surgery followed, and the tumour, measuring 5cm, was successfully removed after a gruelling eight-hour procedure.
Raffi and his family after surgery in Great Ormond Street Hospital's sensory room[Missing Credit]
Two days later, doctors informed Nicky and her husband Neil that the tumour was cancerous and Raffi would require high-level treatment. Despite the surgery’s success, doctors are concerned about the aggressive nature of the tumour and the possibility of recurrence.
In the weeks since, Raffi has been coping with the emotional and physical trauma. “He’s traumatised. He’s scared of everything now and won’t take medicine,” says Nicky.
Raffi has already undergone three lumbar punctures, and chemotherapy is set to begin soon. “It’s a difficult journey ahead,” Nicky adds.
The family has been deeply supported by the Jewish community, with friends and local charities rallying to help ease the burden. “Camp Simcha and Chai Cancer Care have been amazing - they’ve provided specialists and therapists for support,” Nicky says. “The Jewish community has been incredible, offering help, food, and emotional support. Even my husband’s parents flew over from Israel.”
Balancing Raffi’s care with the needs of their two older daughters, Ella, ten, and Talya, seven, has been challenging.
“It’s been difficult to tell the girls that I won’t be around as much. They’ve been incredible, but they know their mum won’t be home as much for the next nine months,” says Nicky. “The school has been so understanding and has been supportive with their teachers.”
As a paediatric nurse, Nicky has cared for children with serious illnesses before, but never expected to face such a situation herself. “It doesn’t feel real. I’ve worked with children with brain tumours, but you never expect to be on the other side of it. It’s scary knowing what could happen. I’m both a mum and a nurse now, and it’s hard to separate the two.”
Friend Jamie Gross (right) is running an ultra-marathon from London to Brighton to raise funds[Missing Credit]
To help cover the costs of travel to and from the hospital, medical expenses and day-to-day living, family friend, Jamie Gross, is running an ultra-marathon from London to Brighton to raise funds.
Speaking with Jamie who also works at Northwick Park in intensive care he said: “This run will give people an opportunity to do something in a meaningful way for the family. This is obviously a very sad story but the money we have raised shows how amazing our community is when things matter. This not only raises awareness about medulloblastoma but also shows how our community can pull together when we are most at need.”
“The donations mean so much to us,” says Nicky. “One of us won’t be able to work for the next nine months, and the financial strain is overwhelming. Every donation helps us care for Raffi in the best way possible.”
Funds will also go towards any special medical accessories Raffi may need and activities to support him and his sisters during the gruelling treatment.
You can support the family through Jamie's fundraising page here or go to: gofundme.com/f/run-for-raffi
Raffi Starkowitz, aged three, from Bushey, Hertfordshire, has already undergone major surgery at Great Ormond Street Hospital to remove a tumour[Missing Credit]