“As much as I wish could, I will never, ever forget that day,” recalls Chantelle O’Connor, reflecting on the moment she found out her toddler had a brain tumour.

James and his twin brother, Joshua, had just turned two when James became very unwell very quickly, with symptoms including a loss of balance, early morning vomiting and severe headaches.

The Lego-loving youngster, from Sittingbourne, was seen by five different doctors over two weeks in 2016 but his parents were told his illness was down to allergies, a virus or reflux.

However, Chantelle said she “knew in her gut” that there was something else behind it and took him to A&E.

A CT scan showed James had a Grade 3 Ependymoma brain tumour – an aggressive form of cancer.

The 36-year-old, who works at a primary school, said: “I was taken into a side room on my own and told the results.

“Within a space of two weeks, my beautiful baby boy had gone from having possible allergies or reflux to brain cancer.”

By this time, the family had moved to Lincoln due to dad Carl’s job in the RAF.

A week after the diagnosis, James underwent eight hours of surgery as doctors removed the tumour.

He then went through a 56-week course of intense chemotherapy.

Despite the treatment, there was always the threat the cancer would return and in 2018 the tumour reoccurred.

James had another surgery followed by three months of proton radiation in Jacksonville, Florida, in the US as part of an NHS-funded trial.

His condition stabilised for around a year but in 2019 three more tumours grew, all of which were inoperable.

He underwent six months of intrathecal chemotherapy followed by photon radiation to the entire brain and spine.

In January 2021, a tumour was found behind his left ear which was removed the next month.

Then in April of that year, new tumours occurred – one in his spine and one in his brain. He had surgery again to remove the brain tumour.

However, he contracted a serious infection in the brain known as ventriculitis, as well as severe hydrocephalus – when there is too much fluid in the brain.

He spent a month in hospital and had three brain surgeries. But by August two new tumours began to grow meaning that James was now living with six tumours.

The eight-year-old was put on oral chemotherapy to buy some time before receiving end-of-life care in September 2021.

He died on February 28, 2022.

Carl, an engineer with the RAF, says it is hard to describe the pain the family went through following James’s death.

The 38-year-old said: “There's no way to put into words how it feels when you know that your child's going to die and then your child dies.

“It's just so difficult and then going in to tell his twin brother that it had happened, it's just heartbreaking.

“Thankfully, we were together with friends and family so we had good support around us but it's the hardest and most painful thing you can ever imagine.”

Chantelle added: “James was so funny, kind and loving.

“He gave the world's best hugs and kisses and loved Disney and Marvel, Lego and cats.

“He adored school and anything to do with numbers or colours, loved to read and sing and food was his everything.

“He had the most beautiful belly laugh and the most infectious smile.”

Around the time of his death, James’s parents decided they wanted to donate Lego sets to the siblings of ill children.

Carl said: “Often we'd be in hospital and someone would offer to gift us something and they would only gift it to James.

“You can't give one something and not the other so we would buy something for Joshua to make up for it.

“We know that being in hospital for a long period of time is very expensive so the last thing you're probably able to do is then buy something for a child's sibling.”

They started The James Anthony Foundation in March 2023, just over a year after James’s death and have donated Lego sets to people living in the Nottingham area who were referred to them by Young Lives Versus Cancer.

The foundation – which has taken James’s first and middle names – also aims to raise awareness of services that can support families going through ordeals like theirs.

Carl admits it is hard to juggle the extra work they have taken on as both parents work jobs as well as running the charity.

He said: “It's driven by the passion and our love for James and knowing other children and families are going through what we've been through.

“It is all worth it if you can put a smile on the kid's face or smile on a parent's face even if it is for 20 minutes and alleviate a little bit of pressure.

“That's the thing that has to drive you.”

To raise money for the charity, it is hosting a football match between his team, which has taken the name of the charity, and Beer Lanyard Football Legends, which is managed by Shaun “The Dark Destroyer” Wallace from ITV’s The Chase.

Other celebrities turning out include The Only Way is Essex and Celebrity Big Brother star Dan Osborne and former Gillingham FC and Bristol City winger Tristan Plummer.

The charity match will be taking place at Gallagher Stadium in Maidstone on Friday (February 21). Kick-off is at 7.30pm.

Tickets are £5 – £2 for children – and can be purchased at www.tinyurl.com/jamesanthonyfoundation

All the proceeds will go towards helping the charity continue its work.

Also, family friend Hadley has been growing his hair since October and plans to have it all chopped off on February 28, the anniversary of James’ passing.

If you wish to donate, click here.

So far, he’s raised £280.