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Family of Sittingbourne boy who died of brain cancer to hold football match in Maidstone

The family of a twin who passed away from cancer aged just eight are setting up a foundation in his memory.

James O'Connor was first diagnosed with brain cancer when he was two years old.

He was born in 2013 to Carl and Chantelle, who are from Sittingbourne, and the pregnancy was "completely normal".

Carl is in the RAF so the family had to move to Lincoln, where twins James and Joshua grew up.

Just after the boys' second birthday, James started showing signs of being unwell.

Carl said: "He started to be sick at random times in the day and had an aversion to lights. The sickness started getting more regular, we didn't really know why."

James had loss of balance, early morning vomiting and severe headaches – which doctors put down to either allergies, a virus or reflux.

But his parents said they knew something more serious was wrong.

After having a CT scan, they were told James had a mass on his brain which turned out to be a Grade 3 brain tumour.

James passed away from brain cancer in February this year
James passed away from brain cancer in February this year

The 36-year-old dad said: "He had a large brain tumour in the back of his head that was around the size of a lemon, which is obviously quite big in a two-year-old's head.

"Seven days after they first found it they operated to remove it – he was in surgery for about 10 hours and they managed to get rid of it all."

After coming out of surgery, doctors discovered James had posterior fossa syndrome, which meant he had to learn how to walk, talk and eat again.

James began a 56 week course of intense chemotherapy.

Carl said: "Obviously it had a huge impact on the family and his twin brother Joshua who was having to go in between preschool and living in a house next to the hospital.

The family are setting up a foundation in James' honour
The family are setting up a foundation in James' honour

"That carried on for just over a year and they stopped it in the end because he had quite severe hearing loss and then he was clear for about 11 months.

"Then it reoccurred again in the same place, but a lot smaller and they caught it a lot earlier.

"We then went to Jacksonville Florida for radiotherapy. We lived in Florida for three months and the radiotherapy had some side effects and issues, but on the whole he was actually okay with it all."

James remained stable until 2019 when three more tumours grew. The tumours were inoperable, but he had another six months of chemotherapy followed by photon radiation to his brain and spine.

In 2020, when Covid hit, James had his first cancer-free year.

Carl, James, Chantelle and Joshua
Carl, James, Chantelle and Joshua

Carl said: "That year of Covid was really good – I know it had an affect on everybody but James absolutely loved it, he thrived. The fact that we were all home together he absolutely loved it and it was the first year that he was clear of anything.

"However, at the start of last year they found another tumour – this time behind his left ear. They operated on it and removed it but then a week later something just wasn't quite right.

"That six week period was really tough because of Covid regulations only one parent was allowed in and Joshua wasn't allowed on the ward."

Last year, it was discovered James had more inoperable tumours, and there was no more treatment available other than chemotherapy.

James and Joshua at Legoland
James and Joshua at Legoland

"Last November and December we ended up having four or five Christmases because we didn't know how long we would have.

"We sort of knew it was getting worse at the start of this year but he had a nice Christmas and New Years, but we could see he was starting to struggle through the month of February.

"On the February 28 this year, he passed away at home. Obviously it was hard for us all as a family but it was the way that he would have wanted it to have been – we were all there together so that gives us comfort."

The family are now in the process of setting up the James Anthony Foundation in his memory.

James' twin brother Joshua
James' twin brother Joshua

They will also be gifting children Lego, as that was one of James' favourite things.

Carl said: "He was mad about Lego, he absolutely loved it. We went to Legoland, watched Lego things on the TV. It's important for us to do something that James loved and be able to pass that onto other kids.

"We want to help other people who have through the same as us, because sometimes it can be very lonely and difficult and you don't know sometimes where to go for advice."

Carl and Chantelle, 34, will be holding a football match at the Gallagher Stadium, the home of Maidstone United on Friday14. This was organised alongside Carl's long-time friend Chris Williams.

The family are holding a football match in Maidstone to raise money
The family are holding a football match in Maidstone to raise money

Kick off will be at 7.30pm. Spectators are welcome – adult tickets are £5, and children are free.

Tickets can be bought here.

Carl said: "Kent was a place James absolutely loved, so it was fitting to do it there.

"We're going to have t-shirts available and selling wristbands with his name on – this event will be the first of many to raise money."

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