Heartbroken parents have paid tribute to their five-year-old son who died just seven months after being diagnosed with brain cancer. Olivier Roberts was found to have a rare and aggressive type of tumour known as a diffuse intrinsic pontine glioma (DIPG) on his brain stem which could not be removed.
As the disease affects the area of the brain responsible for controlling the major functions of the body, Olivier began to lose the use his ability to move, communicate and even breathe despite being fully conscious of what was happening to him. His parents Richard and Marina said that as the tumour advanced, their son was essentially "trapped" in his own body.
Olivier, described as "golden boy" due to his bright blonde hair, died on the afternoon of Saturday, March 26 surrounded by his devastated mum and dad and his three older siblings Aline, seven; Nicole, 10; and Matthew, 16. Sharing the final moments of his life on Facebook, his parents wrote: "We were outside in the garden enjoying the warm spring sunshine when he gasped and then stopped breathing. 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."
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They added: "This awful disease has taken everything from him during this period and ultimately it has taken his life. 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."
Olivier, from Cwmbran, first started to feel unwell in August 2021 when he complained that his left arm and hand were "stuck". Dad Richard recalled: "We asked him to carry out a range of hand movements and we could see that they were very limited. We then asked him to move his arm above his head and he could only go as far as the shoulder. We also asked him to grip our fingers in his hand and there was clearly a reduction in strength.
"We found it very odd that this came on all of a sudden. Just days before he was hiking up hills in Snowdonia with us and running on ahead as he always wanted to be first. He was just a very energetic five-year-old boy."
During a visit to their GP surgery in Cwmbran, Olivier was asked to raise his eyebrows. When the medic noticed that he didn't have the same movement on the left side as the right, he immediately felt it was neurological and the decision was made to take him straight to the A&E department at The Grange University Hospital. After being given scans he was transferred to the Noah's Ark Children's Hospital in Cardiff where he was diagnosed with DIPG and given less than a year to live.
"You read about children with cancer and these poor families having to suffer, but it is one of those things you never really think will happen to you and your family," Richard admitted. Olivier then started his first of 30 radiotherapy treatments at Velindre Cancer Centre in Cardiff in late September 2021 which aimed to reduce the size of the tumour and alleviate his symptoms.
DIPG, which is diagnosed in just 30 to 40 children each year in the UK, commonly causes patients to experience double vision, reduced eye movement, facial weakness and arm and leg weakness. The condition also leads to problems with walking, coordination, speech, chewing, and swallowing. As the tumour progresses it also interferes with breathing and the heart which ultimately results in the child's death.
After Olivier was diagnosed, his parents set about trying to find medical trials that have shown some promise in slowing the progression of the tumour. Tens of thousands of pounds were raised for Olivier through a number of fundraising pages. However, the young child deteriorated quickly.
The family added: "We tried so hard to access treatment for him in New York but we were unable to participate in the clinical trial as the tumour had progressed so quickly after radiotherapy. Whilst we could not participate in the trial we were able to consult with doctors in Zurich, Paris and Frankfurt and obtain some trial drugs which had the potential to help Olivier.
"We were also able to buy different supplements which had potential anti-cancer benefits including prescribed CBD oil. We were also able to purchase some things that helped us to care for him at home in the last few weeks when his condition deteriorated."
Despite everything Olivier went through, his family were able to create some special memories over the past few months. His parents added: "We had a number of trips to London, we went to Legoland and Lapland. We travelled to the south of France after Christmas to visit with family and then to the French Alps and Disneyland Paris. We even had the chance to sleep in a tiger enclosure. We had regular trips to the toy shop to buy our little boy everything he ever dreamed of having. Everything he deserved."
The funeral service for Olivier will take place on Saturday, April 16 at 10am in Cwmbran. The 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."
In memory of Olivier, Richard and Marina have set up a fundraising page, with all money raised being paid directly to a specific DIPG charity, Abbie's Army, which helps to fund clinical trials and research for DIPG in the UK.
