DEVASTATED parents have paid tribute to their five-year-old son who has died following a rare brain tumour diagnosis.

Olivier Roberts, from Cwmbran, was diagnosed with diffuse intrinsic pontine glioma (DIPG) – a type of brain tumour found in the brainstem that almost exclusively affects children – in August.

The tumour’s position meant that it could not be removed so Olivier’s parents Richard and Marina spent the last few months raising money to allow their son to get onto a life-extending medical trial.

Described as their “golden boy”, Olivier died on Saturday, March 26 at his family home.

South Wales Argus: Richard and Marina with their son Olivier. (Picture: Family photo)Richard and Marina with their son Olivier. (Picture: Family photo)

In a social media post, Olivier’s family shared the five-year-old’s final moments.

“We were outside in the garden enjoying the warm spring sunshine when he gasped and then stopped breathing,” the post reads.

“We took him inside the house and spent several hours holding our sweet little boy.

“Our dearest Olivier’s spirit has left his body. He has fought so hard for so long, particularly in the last few days as he struggled to breathe.

“Olivier was diagnosed with DIPG exactly seven months ago. This awful disease has taken everything from him during this period and ultimately taken his life.

“This disease has taken our special son. He has been so brave at every stage. He is now free from pain and the burden of this aggressive brain tumour.

“We have faith that Olivier has gone to a comforting place where he will suffer no more. His beautiful face looks so peaceful. Our love is forever.

“We are heartbroken.”

South Wales Argus: Olivier's parents were raising money to allow their son to get onto a life-extending medical trial. (Picture: Family photo)Olivier's parents were raising money to allow their son to get onto a life-extending medical trial. (Picture: Family photo)

Olivier first started feeling unwell following a fall on a family trip to Snowdonia back in August last year.

“A few days later he came to the dinner table holding his arm and in a strange position. He could not get his arm above his shoulder and he couldn’t grip my hand properly,” Mr Roberts explained.

“We called the doctor the next day and explained the symptoms. We brought him to the surgery and the doctor noted that there was a slight irregularity with Olivier's facial movements on the left side.

“He suggested that as the symptoms were all affecting his left side, the cause appeared to be neurological and we were told to go straight to A&E. That had us panicking and thinking ‘what can it be?’.

South Wales Argus: Olivier was a big football fan. (Picture: Family photo)Olivier was a big football fan. (Picture: Family photo)

“We went to the hospital and Olivier had a CT scan that evening. The results of the CT scan showed a mass around the pons area of the brain stem and an MRI scan was arranged for the following day. We had to wait for two days to get the results of the scan back.

“The doctor came in and said they had the results and that they were very, very sorry to tell us that our son had a brain tumour and due to its position, it couldn’t be removed.

“It makes me sick just thinking about how I felt at that time. It’s something you never think you’ll hear, that your little boy is so unwell that they can’t operate.

“The only treatment they can offer is radiotherapy. The intention of the radiotherapy is to reduce the size of the tumour and that we would have a period to make memories after the radiotherapy.”

Olivier’s parents have spent much of the past few months speaking to experts and researching potential next steps, which include medical trials in the US and in Zurich, as well as off-trial medication in Germany.

And despite tens of thousands of pounds being raised, Olivier’s condition deteriorated quickly.

Olivier’s funeral service will take place on Saturday, April 16 at 10am in Cwmbran. His parents added: "We chose this date during the Easter weekend as it was Olivier's favourite celebration, and also because of what Easter means for us.

"It is also just a few days before his sixth birthday. Due to space limitations, we regret that attendance at the church service will need to be by invitation only.

"However, if you live locally and would like to pay your respects to Olivier, at 9.45 am the funeral procession will pass along Llanyravon Way, Cwmbran, where we will do a section of the route to the church on foot, in front of Llanyravon Primary School.

"This is the area where Olivier went to nursery, to school, and is very close to his first home. We hope that lots of you will be able to join with us on that day."