Raffi Starkowitz’s parents describe their little be as ‘cheeky, funny, and kind.’

Like lots of four-year-olds, he loves playing with his trains and cars, and kicking balls around.

But in March 2025, Raffi began walking differently.

‘We thought his walking unsteadily was strange, but nothing out of the ordinary,’ Raffi’s parents, Nikki, 46, and Neil, 47, explained.

The couple, from Barley, Hertfordshire, were with their two older daughters, Ella, 10 and Talya, seven, when they first got a call from Raffi’s nursery about his wobbliness — with staff saying he was leaning heavily to one side.

So, they took Raffi to the GP, who was unsure over what was causing the four-year-old’s walking problems, and referred him to A&E.

‘There, Raffi had a blood test that came back normal,’ the pair noted. But still worried, they showed the doctor a video of Raffi walking normally.

‘That is when the doctor recommended an MRI scan. Then things went downhill quickly,’ they shared.

With Nicky being a nurse herself, so was able to quickly pick up on the fact that the doctors likely suspected Raffi was in trouble.

‘When I was in the MRI room with Raffi, they came in halfway and gave him contrast [a dye that makes certain areas on a scan show up more clearly].

‘As a nurse, I knew that you only give contrast when you see something on the scan,’ she explained. ‘From that point, I knew it was something serious.’

And, five days later, Nicky and Neil were delivered the devastating news: their four-year-old son had a brain tumour.

‘When we got the news, we felt like someone had punched us in the chest and knocked all the wind out of us,’ the couple shared.

‘Nothing prepares you for the moment you are told that your child has cancer.’

Nicky and Neil couldn’t believe how quickly their son went ‘downhill,’ especially given that it’d only been a week since Raffi’s unsteadiness was spotted at nursery.

The doctors immediately jumped into action, with Raffi undergoing a 10-hour operation to remove the tumour at Great Ormond Street Hospital, which thankfully proved to be a total ‘success.’

‘They were able to remove the whole mass and not leave anything inside,’ Neil says.

However, following Raffi’s two initial rounds of chemotherapy, doctors found that the cancer had spread.

It was naturally an incredible scary time for the family and Raffi immediately started six weeks of radiotherapy in June 2025. The side effects were brutal for the little boy, who dealt with sickness, fatigue, skin peeling and hair loss.

Thankfully, by September, further scans revealed that there were no longer any visible signs of disease.

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.’

For this family, however, their struggles weren’t over yet.

Five months after Raffi’s diagnosis and treatment, Nicky discovered an unusual mark on her breast, and was later diagnosed with stage three breast cancer.

The mum had three tumours, and underwent a mastectomy and complete reconstruction.

To combat this, the 46-year-old is currently receiving six months of chemotherapy, which will then be followed by radiotherapy and hormone treatment.

But for both Nicky and Neil, their focus is still their son, as the risk of relapse is sadly very high for the type of cancer Raffi had.

‘Luckily, there is a huge amount of treatment available for me, but for Raffi there is not,’ Nicky explained. And while his current scans show no visible disease, there’s a high risk the cancer could return.

So, with no preventative treatments currently available in the UK, the couple have shifted their sights to across the pond.

In the US, some children’s hospitals are trialling a new drug, difluoromethylornithine (DFMO), to treat high-risk medulloblastoma. Raffi’s parents wrote to ‘every hospital in America’ that is taking part in this trial to try and get their son a place.

Penn State Children’s Hospital, in Pennsylvania, replied, and offered Raffi a place.

Nicky and Neil have created a GoFundMe and are now in the process of trying to raise £300k to cover the cost of any ‘treatment, travel insurance, accommodation, and any future medical needs.’

So far, the pair have reached more than £200,000. On their GoFundMe, Nikki and Neil thanks their supporters ‘from the bottom of our hearts’, adding: ‘You have given our little boy a real chance at life, and we will never forget it.’

DFMO is currently only used to treat high-risk neuroblastoma in the UK and has not yet been approved by regulatory bodies for use on other rare cancers. So, this feels a lot like the family’s best chance at getting Raffi the care he needs.

Hopeful for the future, Nicky and Neil are aiming to ‘head out there at the end of January 2026 to meet the team.’

They are continuing to raise money to support Raffi in his health journey.

‘We are now raising our target to help fund these long-term needs, cover future scans and care, and ensure we can access any new or emerging treatments or clinical trials that may offer him the best possible future.

‘Thank you for standing with Raffi and our family, and for helping us fight for his tomorrow,’ the shared.

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