Cwmbran five-year-old diagnosed with DIPG brain tumour

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

Due to the tumour’s position, it cannot be removed, and now Olivier’s parents – Richard and Marina – have shared his story to raise awareness of the condition, as well as to help raise money to allow Olivier to get onto a life-extending medical trial.

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“Olivier is just a fun-loving boy. He was a normal five-year-old boy who loved running and going out on his scooter,” said Mr Roberts. “We were away in Snowdonia and he tripped over. He started limping and we found it a bit odd as it was an innocuous fall.

“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.

“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?’.

Olivier Roberts had to undergo six weeks of radiotherapy treatment. 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 with his mum and dad - Marina and Richard - after he completed his radiotherapy treatment. Picture: Family photo.

Olivier had six weeks of radiotherapy, five times a week. Mr Roberts said the radiotherapy treatment had improved Olivier’s condition – from previously being unable to walk or support his own weight to on Tuesday, where he returned to school for his first time back with classmates since his diagnosis.

“He’s just been amazing, he’s been so brave and never been difficult,” saod Mr Roberts. “He’s just adapted. He just wants to play and have fun.

“It’s hard for him that he can’t do the same things he loved doing.

“The NHS have been amazing. The doctors and everyone have been wonderful. But its unfortunate the system doesn’t allow any more options.”

Olivier, a Cardiff City fan, was invited to watch a training session and meet the players. Picture: Family photo.

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.

Mr Roberts said they hoped to get onto a medical trial to allow for research to be conducted into DIPG. However, these trials can cost several hundred thousand pounds, so Mr and Mrs Roberts set up a fundraising campaign - which has currently raised more than £25,000.

“We have just been amazed by the response,” said Mr Roberts. “The local community have just been incredible.

“When it is a child and it’s someone so young it strikes a chord with everyone.”

You can find out more, or donate, at gofundme.com/f/treatment-for-olivier-our-golden-boy