Family raise £200,000 to get life-saving cancer treatment for their son, four

Still, Nicky took Raffi to the local GP, who signposted him to A&E for blood tests and an MRI. It was the latter that revealed a large tumour on his brain.

“When the doctor came to see me after the MRI, I could see on their face it wasn’t good news. When I looked at the scan, it was shocking. There was something big on his brain. We were blue-lighted straight to Great Ormond Street Hospital, where he got worse. A few days later, he had a ten-hour operation.”

She adds: “It was just absolute shock, and then the tears came. Telling people was really hard. We just couldn’t process it.”

The procedure successfully removed the tumour – but doctors later confirmed that Raffi had Group 3 Large Cell Anaplastic Medulloblastoma, a rare and aggressive form of brain cancer that affects a handful of children every year. What followed were rounds of chemotherapy and radiotherapy.

Raffi, following his surgery (Photo: courtesy)[Missing Credit]

“It was tough,” she says. “He lost his hair and skin on his head, stopped eating and was constantly tired.”

Nicky – a children’s nurse at Northwick Park Hospital – took unpaid leave to care for Raffi and postponed her advanced nurse practitioner course. While his father Neil has continued working in IT, the loss of Nicky’s income has had an impact on the family. “Financially, it’s been very tough,” she says. “I haven’t been able to work at all. My husband is working, but there’s not much support for this situation as sick leave is unpaid after a point, and there aren’t further government supports for families like ours.”

Raffi, following intensive chemotherapy (Photo: courtesy)[Missing Credit]

Five months after Raffi’s diagnosis and subsequent treatment, the family received a further blow when Nicky discovered an unusual mark on her breast.

“Tests revealed three tumours, and I was diagnosed with breast cancer,” she says. “I had a mastectomy and reconstruction, a long recovery and then started chemotherapy myself.”

She adds: “Explaining it all to Raffi was hard. We said he had a lump in his head, which was removed, and now he’s having medicine to keep it away. It’s difficult to know how much he understands, being so young. When I got diagnosed with cancer, we talked about my lump and my treatment as well.”

Both Raffi and Nicky will be undergoing chemotherapy simultaneously this month to prevent their cancers returning. Still, Raffi has sometimes been able to see friends at Hertsmere Jewish Primary School, which he now attends.

Raffi and Nicky Starkowitz after Raffi's induction chemotherapy (Photo: courtesy)[Missing Credit]

Reflecting on life for Raffi before his diagnosis, Nicky says: “Before he was diagnosed, my husband would take him to Rugbytots every week. He was a very normal, happy little boy,” she says. “He’s quite cheeky and strong-willed, with a brilliant sense of humour. He likes things being done as they are meant to be done – he likes to feed the rabbits and the cat. He also likes to help his dad in the garden and loves doing cooking with me.

“He loves trucks and trains. More than anything, he loves it when the Ocado delivery comes every week. They did a special thing, where he met the workers, climbed in the van and got some treats. He’s been in an ambulance a few times and now wants to be an ambulance driver in the day and an Ocado driver in the evening.”

Raffi Starkowitz (Photo: courtesy)[Missing Credit]

Now, the family say his best chances come with him going to America to take part in a two-year programme to trial DFMO drugs at Penn State Children’s Hospital in Hershey, Pennsylvania.

They booked a flight to go to the United States at the end of January, but needed to raise £200,000 to cover treatment, insurance, accommodation and travels costs. Within days of the GoFundMe page launching, the Bushey-based family raised the money after the link was shared on school and shul social media groups. The fundraising goal has now been increased to £300,000 as Raffi will need long-term medical care. Any surplus funds will go towards research into this rare type of cancer.

Nicky, whose whole family has been closely supported by Chai Cancer Care and Camp Simcha, says: “Everyone in the Jewish community has been incredibly generous and supportive. We feel so grateful.”

To donate, please go to: gofund.me/86a5dbd31 or click here