£175k raised in two days to save four-year-old Raffi’s life
'Cheeky, funny and kind' boy was diagnosed with a brain tumour in March - with his mother now going through radiotherapy herself for stage 3 breast cancer
Thousands of people have rallied round a young family, donating £175,000 in just 48 hours after the parents of four-year-old Raffi Starkowitz issued a desperate plea to help save their little boy’s life.
Bushey parents Neil and Nicky Starkowitz describe their son as “full of life — cheeky, funny, and kind” and a boy whose “smile lights up every room”. Raffi has been accepted for treatment in America that could save him, but the family must somehow find £200,000 to get him there.
Neil, a 47-year-old IT project manager who moved from South Africa, told Jewish News how their world turned upside down. “When this all started, Raffi was full of energy, kicking balls, going to Rugby Tots every Saturday. He loved helping around the house, in the garden, in the kitchen,; a real busy-body with lots of lots of energy. But in March 2025, everything changed.”
It began with a call from Raffi’s nursery saying he was walking strangely. The family assumed an infection. But, says Neil, “a few days later, after tests and an MRI, our world came crashing down – Raffi had a large brain tumour in his cerebellum.”
Known as the “little part of the brain”, the cerebellum’s primary function is to coordinate movements, including posture and balance. It also plays a role in motor learning and is increasingly being researched for its involvement in cognitive functions like thought, emotion, and social behaviour.
Rushed by ambulance to Great Ormond Street Hospital (GOSH), Raffi deteriorated quickly between the Monday and Friday, when “he was just lying down, couldn’t sit up or do anything, and at one point, we pressed the crash button because he had stopped breathing.”
Raffi underwent a 10-hour emergency brain surgery. Although the operation was successful, and surgeons removed the whole tumour, the relief was short-lived.
Doctors found Raffi had Group 3 Large Cell Anaplastic Medulloblastoma, a very rare and aggressive brain cancer. Only a handful of children in the UK are diagnosed with this subtype each year.
Since then, Raffi has endured more than any child should. Multiple rounds of intensive chemotherapy, weeks in hospital, and six weeks of daily radiotherapy under general anaesthetic.
He’s suffered from side effects including sickness, fatigue, infections, hair loss, and the skin on his head peeling.
Neil and Nicky explained Raffi’s condition to him “in very basic internal terms. We told him he had a lump in his head and it had to be removed, and now he’s getting medication. Sadly, kids get used to situations, and he’s got used to having to go into hospital, people taking blood, giving blood and medications.”
Later scans showed no visible disease — and for the first time, the Starkowitz dared to hope. But Raffi’s type of cancer is incredibly aggressive. Even with the best treatment, the risk of relapse is very high, and there are no preventative options in the UK.
The family are now fundraising to take him to the United States to join a new two-year drug trial to treat high-risk Medulloblastoma at Penn State Children’s Hospital in Hershey, Pennsylvania.
Neil said: “He’s already been accepted onto the programme — our only barrier now is funding. The total cost — including treatment, travel, insurances, and accommodation — is estimated at around £200,000.”
Added to the incalculable strain on the family was Nicky’s diagnosis with Stage III breast cancer shortly after Raffi’s radiotherapy.
A paediatric nurse at Northwick Park Hospital, she’s had surgery and is going through chemotherapy and radiotherapy herself — all while caring for Raffi and his sisters, ten-year-old Ella and seven-year-old Talya.
Neil says: “Even though she’s going through what she’s going through, she’s carrying on like a soldier.”
Writing on the fundraising page, which is currently at more than £175k from over four thousand donations, Neil says: “Our family has been through unimaginable pain, but we refuse to give up. We’re doing everything possible to give Raffi the future he deserves — to grow up, to play, to live.”
Still undergoing chemo, “which basically completely knocks you out, and afterwards Raffi is really poorly”, in the last two weeks. the four year old has been in hospital fighting multiple infections, skin infections, shingles infections, and on several different antibiotics.
Neil adds: “Because when you’ve got no immunity, you just get everything. The amazing thing is that when he’s feeling well, he’s he’s great. He still has that smile on his face, running about and playing. He’s very brave, taking it in his stride and we are so incredibly proud of him.”
- To support Raffi, click here.
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