A FIVE-YEAR-OLD boy from Cwmbran who has a rare brain tumour still has “the biggest of smiles” despite the tumour growing once again.

Olivier Roberts, five, was diagnosed with diffuse intrinsic pontine glioma (DIPG) in August last year. Due to the tumour’s position in the brain stem, it is inoperable.

Following the end of his radiotherapy in November, Olivier’s symptoms “improved significantly”, but earlier this year, his parents noticed a deterioration in his balance and ability to walk.

In February, Olivier’s consultant oncologist in Cardiff told his parents that – given his worsening symptoms – the tumour had likely reached the progression stage.

This meant he was no longer able to get on to a trial in New York, which his parents had planned for.

Free Press Series: Olivier Roberts was diagnosed with DIPG in August. Picture: Family photo.Olivier Roberts was diagnosed with DIPG in August. Picture: Family photo.

Richard and Marina Roberts held discussions about getting Olivier on to a ONC201 trial in France, where it is only available when a patient is ‘on progression’ – when the tumour is growing – and if the person has the H3K27M mutation – which around 80 to 90 per cent of children have.

However, Olivier would have needed a biopsy and the results would need to be analysed. His parents were concerned this could take too long.

Instead, they were able to get a consultation with a doctor in Germany – on February 14 – where Olivier was given a three-month prescription of ONC201 – which he started taking from February 16.

“His symptoms have stabilised,” said Mr Roberts. “I’m cautious to say he’s improved but I think that would be fair to say.

"He has more movement in his arms and legs since he started taking them. Whether that’s the drugs working or the tumour just reacting differently I don’t know.

“We’re just pleased he’s not deteriorated.

“He’s not in pain and he’s happy most of the time. He’s as happy as you can be in that situation.

“He loves watching us play for him, deciding which of his cars to play with.

Free Press Series: Richard and Olivier playing with his toy cars. Picture: Family photo.Richard and Olivier playing with his toy cars. Picture: Family photo.

“He’s just a five-year-old boy who wants to be a five-year-old boy but he’s trapped in a body that doesn’t work. That’s the tragic thing – he’s still that very bright young boy.

“It’s an odd position to be in as we know what’s around the corner, but we don’t know how soon that will come.

“But it just gives us hope that we might have a bit longer with him.

“The longer we have with him, there’s always a chance of something new coming up. There are some trials starting in London maybe even as soon as the summer. So if things go well with this first drug, we might be able to do something with that.”

Free Press Series: Richard and Olivier Roberts. Picture: Family photo.Richard and Olivier Roberts. Picture: Family photo.

Mr Roberts said he was contacted by Cwmbran Centre towards the end of last year, where they were offered the chance to fundraise at the centre. He thanks staff at the centre, as well as staff at Torfaen council for providing a street collection permit.

Richard Roberts was granted a street collection permit for “Treatment for Olivier - Our Golden Boy" in Cwmbran Town Centre for December 11 and December 23, 2021.

The beneficiary of the collection was the treatment fund for Olivier Roberts.

The collection on December 11 raised £956.19, and £1,762.49 was collected on December 23. There were no expenses.

“We were overwhelmed how kind people were and how generous everyone was,” Mr Roberts said.

“It’s another example of how we’ve been lucky to live in this community.”