Hi, my name is Clare and I’ll be running my very first half marathon in April. I can’t think of a more deserving cause than helping to fund Raffi’s essential treatment.

Raffi’s Story

My friend Nicky’s little boy Raffi is four years old. He’s full of life — cheeky, funny, and kind. He loves playing with cars, diggers, trains, and kicking balls. His smile lights up every room.

But in March 2025, everything changed.

A Sudden Change and a Shattering Diagnosis

One Monday, Raffi’s nursery called to say he was walking unsteadily. His parents thought it might be an ear infection or a virus.

A few days later, after tests and an MRI, their world came crashing down — Raffi had a large brain tumour in his cerebellum.

He was rushed by ambulance to Great Ormond Street Hospital (GOSH). Within days, Raffi underwent a 10-hour emergency brain surgery.

The operation was successful, and surgeons removed the whole tumour — but relief was short-lived.

The results showed that 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.

The Fight of His Life

Even after the initial rounds of chemotherapy his cancer spread.

Since then, Raffi has endured more than any child should. He’s been through multiple rounds of intensive chemotherapy, weeks in hospital, and six weeks of daily radiotherapy under general anaesthetic.

The side effects have been heartbreaking: sickness, fatigue, infections, hair loss, and the skin on his head peeling. Yet through it all, Raffi has never lost his smile or his sense of humour.

After radiotherapy, scans showed no visible disease — and for the first time, this family felt hope.

But this type of cancer is known for being aggressive. Even with the best treatment, the risk of relapse is very high, and sadly, there are no preventative options in the UK.

A Chance for Hope in the USA

That’s why I’m helping with fundraising to send Raffi to the United States to join a new trial using DFMO drugs to treat high-risk Medulloblastoma.

It’s a two-year programme at Penn State Children’s Hospital in Hershey, Pennsylvania and has shown promising results in helping children with high-risk cancers like Raffi’s stay in remission.

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. The family have already raised a record breaking amount in a short period of time. I’d like to ask for your help to reach their target.

A Double Battle

As if Raffi’s battle wasn’t enough, his mum Nicky was also diagnosed with Stage III breast cancer shortly after Raffi’s radiotherapy.

She’s had surgery, is going through chemotherapy and radiotherapy herself — all while caring for Raffi and his sisters, Ella and Talya.

This family has been through unimaginable pain, but refuse to give up. They’re doing everything possible to give Raffi the future he deserves — to grow up, to play, to live.