In Our Hearts

We are grateful to Aaron and his mum, Nicola, who worked with us in December 2020 to share his story here. Sadly, he passed away in April 2023. We remember Aaron as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. He will be forever in our hearts.

In April 2020, as the UK was coming to terms with a national lockdown caused by the COVID-19 pandemic, the lives of the Wharton family from Flintshire were turned upside down for a completely different reason. Their only child, four-year-old Aaron, was diagnosed with a rare, aggressive form of brain cancer. Brave Aaron has since undergone brain surgery, radiotherapy and has had a gastrostomy feeding tube fitted. His latest scan results were stable but Aaron’s parents know that their son’s future is uncertain and they’re determined to make the most of every day together as a family.

Welsh toddler Abigail Burrows was 21 months old when, in April 1996, she was diagnosed with an aggressive brain tumour. She died shortly after an operation to remove it, just six days after the diagnosis. Her brothers, Grant and Dale, were 13 and 11 when she died and her mum Kazzy was seven months pregnant with her younger brother Sam, who was born seven weeks to the day after her tragic death. Kazzy, originally from Swansea, but now living in Pembrokeshire, went on to have another daughter, Poppy, born in 1997 and she also has a stepson, Will, now 26. The pain of losing a child has never left her and not a day goes by when she doesn’t remember her ‘extraordinary’ little girl, Abby. This month, Kazzy, now a grandmother-of-two, is taking part in the 10,000 Steps a Day in February challenge in memory of her daughter and to help prevent other families from experiencing such devastation. 

We are grateful to Adam who worked with us in October 2017 to share his story here. Sadly, he passed away on 23rd December 2019. We remember Adam as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. He will be forever in our hearts.

A seizure struck Adam down out of the blue and led to his brain tumour diagnosis. He underwent surgery, radiotherapy and chemotherapy and was well enough to take part in a gruelling cycle challenge in the heat of the Arizona desert. He completed the event with his father who, 15 years earlier, had lost his mother to a brain tumour.

A farmer and keen hunting man, Adam was diagnosed with a high-grade glioblastoma multiforme (GBM) brain tumour. Surgery was not an option and he underwent chemotherapy and radiotherapy but passed away at home 11 months later, at the age of 42.

“Somehow Adam found the strength to cope. He was a trooper and his concern was always for others. His tumour was a grade four glioblastoma multiforme (GBM), the worst it could possibly be. I don't think Adam really knew how high-grade his tumour was, but he was aware that it was inoperable and the prognosis was bleak; he had probably just two years to live, five years at best. Radiotherapy and chemotherapy began and that took us up to March and he lived for just two months after that.”

Director Adrian Vitoria was shooting a film in the States when he was diagnosed with a brain tumour. He underwent surgery and self-funded pioneering new treatment, continuing to work on what was to be his final project while having chemotherapy. Adrian returned to Suffolk in the later stages of his illness. He passed away in November 2016 at the age 48.

“I don’t think people are aware of how cruel this disease is. It was torture for me to watch as Adrian was robbed of his mobility and his faculties especially as he was such a great communicator. He became bedridden, unable to even lift his head. It was an agonisingly slow decline as my brother became locked-in as the tumour grew.”

Our first born child, Aidan, was just 16 months old when he first became ill.  He was diagnosed with a variety of different infections, but five weeks later we were given the horrific news he had an aggressive medulloblastoma brain tumour which had also spread into his spinal cord.  Aidan was given the best treatment options available at the time and fought a brave battle, but despite everything, we still lost him just one month shy of his fifth birthday.  Now we want to raise awareness and help prevent other children from having to face a similar fate.

“Research into paediatric brain tumours and how to treat them effectively is the only thing that can save the lives of other children like Aidan.  A greater understanding of how the different tumour cells develop, as well as discovering more effective treatments that target those specific cells, will not only reduce mortality, but will also improve the quality of life of children who survive brain tumours.”