Stourbridge schoolboy Riley Gregersen died in the arms of his devastated mother Gemma on August 31 after being diagnosed with an aggressive glioblastoma multiforme tumour in January last year.
The Lutley Primary School pupil had suffered a seizure at his after-school club following weeks of experiencing symptoms which included tiredness and a tremor in his right arm which affected his writing at school.
His mother Gemma, a 29-year-old administrative assistant at a property management company in West Bromwich, said: “Just before the Christmas holidays in 2019, I took him to the GP. They said his symptoms were stress-related, or possibly a trapped nerve.
"We were sent away and told to come back in a few weeks’ time for a blood test if he was no better, which we did.”
His blood tests did not reveal anything of concern, but before his MRI scan appointment arrived he suffered a seizure.
Despite surgery to remove some of the tumour his "prognosis remained stark" so Ms Gregersen and Riley’s dad Scott looked into treatments being offered at a private clinic in Germany which would cost £55,000.
The family raised the sum with the help of donations via the website GoFundMe page, but, in the spring, Riley’s condition worsened.
“Things had been going so well when, in May, Riley started complaining of numbness in his legs and he had balance issues.
"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.
“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.”
Riley had been given more palliative radiotherapy, but after that there were no other treatments available. The German clinic sent Riley’s vaccines as he was unable to travel, but the family was unable to find any medics here who were willing to administer it.
Now less than four months after her devastating loss the mother says she’s ‘nowhere near’ coming to terms with his death.
"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.
"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.”
Her efforts to help charity Brain Tumour Research include setting up a social media page last year after learning about the number of young people affected by the disease.
“Riley always wanted to help people. After he died, so many people told me about how caring he was. I found out that he used to look after a little girl in reception class, who was being picked on.
"One thing I am pleased to do is to share our story to help raise awareness, in the hope that I can help to make a difference, in Riley’s name.”
Brain tumours are a leading cause of deaths in children and adults aged under 40, but the charity claims just one per cent of the national spending on cancer research has been allocated to fighting it. It wants to see funding increased to £35 million per year to improve survival rates.
Brain Tumour Research's community development manager Mel Adams said: "Riley’s story reminds us that brain tumours are indiscriminate. They can affect anyone, at any time."