MUM Nicky Starkowitz felt like she’d been “hit by a train” when her son Raffi was handed his cancer diagnosis.
The only clue of the four-year-old’s devastating disease was the way he walked at nursery.
Raffi’s parents Nicky and Neil were alerted to his unusual walk by his nurseryCredit: SWNS
Raffi had been unsteady on his feet and was leaning to one sideCredit: SWNS
In March this year, Raffi was at nursery when he suddenly began being unsteady on his feet, leaning to one side.
Nicky, 46, and his dad Neil, 47, took him to A&E where an emergency MRI scan revealed a mass on his brain.
It was then Raffi was diagnosed with a group 3 large cell anaplastic medulloblastoma – an aggressive, high-risk brain , which is most common in infants and young children.
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 had been at their daughters’, Ella, 10 and Talya, seven, school when they got a call from Raffi’s nursery about the odd symptom.
Initially, they thought it was nothing out of the ordinary, but they took Raffi to the 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.”
Raffi underwent a 10-hour operation to remove the cancer at Great Ormond Street Hospital.
Neil, a project manager, said: “The was successful, and they were able to remove the whole mass and not leave anything inside.
Nothing prepares you for the moment you are told that your child has cancer
Nicky Starkowitz
“Doctors had suspected that it was brain cancer, but at that stage they weren’t too sure.”
But 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.
An MRI scan found he had a group 3 large cell anaplastic medulloblastomaCredit: SWNS
Doctors were able to remove the whole mass during surgeryCredit: SWNS
“From that point, I knew it was something serious.”
Raffi underwent two initial rounds of , which showed that the cancer had spread.
And in June this year, started six weeks of radiotherapy.
A couple of months later, in September, 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.”
ANOTHER BLOW
The family were dealt another blow when Nicky was diagnosed with stage three breast cancerCredit: SWNS
Raffi with dad NeilCredit: SWNS
While Raffi was going through treatment his mum, the family were dealt another blow, when Nicky was diagnosed with stage three .
She 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 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.”
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.
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.”
The family are now trying to raise £300,000, which will go towards any treatment, travel insurance, accommodation, and any future medical needs.
To donate to the fundraiser, click here .
Medulloblastoma - the signs and symptoms
Medulloblastoma is the second most common brain tumour in children. It’s the most common malignant (high grade) children’s brain tumour.
Around 52 children are diagnosed with medulloblastoma each year in the UK. Adults can also get this type of tumour, but it is rare.
Your child might have symptoms for a few weeks or months before they are diagnosed with medulloblastoma.
Many symptoms are general and non specific. Some are similar to less serious childhood illnesses. Symptoms might include:
- headaches in the morning
- feeling or being sick – being sick often makes the headaches feel better
- double vision
- finding it hard to sit or stand unsupported – your child might often fall backwards
- being more fractious or irritable – it might be taking longer than usual to get your young child to settle
- loss of appetite
- behaviour changes – they might be interacting with you or their siblings less
The main treatments for medulloblastoma are:
- surgery
- radiotherapy
- chemotherapy
Source: Cancer Research UK
Raffi’s current scans show no visible disease, but there is a high risk the cancer could returnCredit: SWNS
The family are now hoping Raffi can get treatment abroadCredit: SWNS 
