Mum faces first Christmas after losing son to brain tumour

Schoolboy Riley Gregersen was diagnosed with an aggressive glioblastoma multiforme in January 2020, after suffering a seizure at his after-school club at Lutley Primary School, Halesowen.

His shock diagnosis came after weeks of various symptoms, which included tiredness and a tremor in his right arm.

On February 28 2020, he had surgery and surgeons managed to remove 40 per cent of the tumour with the remaining mass targeted with intensive radiotherapy and chemotherapy.

However, Riley’s prognosis remained stark so his mum Gemma, with Riley’s dad Scott, began researching alternative treatment options overseas and they found a private clinic in Germany which could make targeted peptide vaccines which the youngster's parents believed would give the best chance of extending his life.

Riley Gregersen with his dad Scott

Unable to cover the £55,000 costs themselves, Riley’s family set up a GoFundMe page, which was inundated with generous donations.

By December 2020, they’d reached their target but in the spring this year Riley’s health took a turn for the worse.

Gemma said: “Things had been going so well when, in May, Riley started complaining of numbness in his legs and he had balance issues. He was having problems going to the toilet, even though he was drinking a lot. I called for an ambulance and they took us into Birmingham Children’s Hospital. They did another MRI scan and when got the results, my world fell apart. The tumour had spread and four new tumours had appeared on his spine. There was very little they could do.”

Riley had more palliative radiotherapy but after that, there were no other treatments available. The German clinic sent Riley’s vaccines to the UK, as he was unable to travel, but Gemma said she couldn’t find anyone in the country willing to administer the vaccine.

She said: “It was completely shattering. On June 3, Riley was admitted to Acorns Children’s Hospice. Nearly three months later, at 8.45pm on August 31, my precious boy died in my arms. Even though I knew it was coming, it was an absolute shock and just so hard to comprehend.”

Less than four months after her devastating loss, Gemma says she’s ‘nowhere near’ coming to terms with what has happened and is now facing her first Christmas without Riley.

She said: “Riley loved everything about Christmas and I have so many special memories to cherish. Every year he would sit with the Smyths Toys catalogue and tell me everything he wanted. He loved to pick out presents and write cards for his friends too; he was such a kind and generous boy. We would drive around looking at Christmas lights on people’s houses.

Riley ringing end of treatment with Gemma

"Last year, he had the chance to feed and play with reindeer – he loved that. I’ll never forget the huge smile on his face when I would take his photo in front of our Christmas tree, it was the best thing ever.”

Gemma said this year she didn't even want to put up her Christmas tree but she added: "I’ve done it, reluctantly, as I think Riley would have wanted me to. "Normally, the Christmas music would be on repeat by now but this year, I can’t listen to it without him, it’s just horrible.

"I’ll spend the festive period with relatives, so I won’t be on my own, but I’ve no doubt it will be really tough.”

Shortly after receiving Riley’s diagnosis, Gemma set up a Facebook fundraiser to raise money for Brain Tumour Research, as she was ‘angry’ to discover the statistics surrounding brain tumours.

Brain tumours kill more children and adults under the age of 40 than any other cancer yet historically just one per cent of the national spend on cancer research has been allocated to fighting the disease.

Mel Adams, community development manager for Brain Tumour Research, said: “At a time when Gemma should be looking forward to Christmas with her little boy, she is grieving her terrible loss and like many other families affected by brain tumours, facing a painful festive period.

"We send her our deepest condolences and will be thinking of her at this difficult time.

"Riley’s story reminds us that brain tumours are indiscriminate; they can affect anyone, at any time.

"We remember Riley as we continue in our mission to increase the UK investment in brain tumour research, in order to find a cure for this hideous disease.”

Brain Tumour Research funds research at dedicated centres in the UK. It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours to speed up new treatments and ultimately find a cure.

The charity is the driving force behind the call for a national annual spend of £35 million to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.

Gemma said she hopes sharing her story helps to raise awareness in the hope that she can "help to make a difference in Riley’s name".