Children lost to brain tumours inspire Walk of Hope to find a cure

A seven-year-old boy and a 13-year-old girl lost to brain tumours, have inspired their families to lead a Walk of Hope in Ellesmere on Saturday 30 September to help raise awareness and funds to find a cure for the disease.

The two bereaved families have both set up Fundraising Groups under the umbrella of Brain Tumour Research (the charity responsible for Walk of Hope), called Aaron’s Army and Ella’s Army. They are joining forces to host the Ellesmere Walk of Hope in their fight to fund research to bring about better treatments and ultimately a cure for brain tumours.

Aaron Wharton from Buckley in Flintshire, North Wales, was diagnosed in April 2020, aged four, with an anaplastic ependymoma after he developed a droop on one side of his face and started randomly being sick and frequently tripping over.

Initially, Aaron underwent two surgeries, developing meningitis twice during his initial 10-week stay in hospital and suffering posterior fossa syndrome (PFS) from surgery which affected his speech and ability to swallow. He then went on to have radiotherapy at The Christie in Manchester over a six-and-a-half-week period.

In September 2020, Aaron achieved a huge milestone, enjoying his first day at primary school. However, in June 2021, came the earth-shattering news that Aaron had relapsed. He underwent further operations and also had chemotherapy treatment, but still the cancer came back. In January 2023, a scan showed the tumours had regrown significantly and Aaron was taken off chemotherapy to allow him to have some quality of life. His family were told there was no other treatment available to him.

While the family were on holiday in Porthmadog in April, Aaron’s condition deteriorated considerably. He was taken to hospital and then transferred into the care of a children’s hospice in Conway, where on Easter Sunday this year, he passed away.

Nicola said: “Nothing prepares you for losing your child. Aaron was robbed of his life and from being with us. It’s unbelievable that with all the advancements in so many other cancers there is so little available for those diagnosed with brain tumours and especially children. Aaron was so full of life but was lost to the cruellest of diseases.

“Some days Aaron’s loss is so overwhelming. I worked hard to build a career to be in a position to have Aaron and now both Lee and I feel a piece of our heart is gone and we’ll never be the same.”

Heartbreakingly, Ella McCreadie, from Ellesmere in Shropshire, went to sleep one night and never woke up. 

In December 2022, her parents Sophie Penrose and Alastair McCreadie found Ella had passed away in her bed. It was only later when they received the coroner’s report they learnt their beloved eldest child, and only daughter, had suffered a haemorrhage caused by a high-grade diffuse midline glioma – a fast-growing tumour in the brain with a very short survival prognosis.

Her shocked parents said there was no warning of her condition as she had no symptoms at all. Five days before her death, Ella had been riding her horse, Bliss, and the day before, she was at school – Lakelands Academy – as normal.

Sophie, also mum to Niall, 11, and seven-year-old Shay, said: “You never expect anything like this will happen to your family. You think you can shield your family from everything.

“I can’t believe there is so little support from the Government – just 1% of the national spend on cancer research has been allocated to brain tumours. Brain tumours are seen as rare, but in my experience, they are not rare at all.

“As broken as I am, I would have been even more broken if Ella had to endure endless operations and treatment, knowing she didn’t stand a chance because so little funding has gone into researching better outcomes for brain tumour patients. She also would have hated losing her hair, because Ella took so much pride in her appearance.

“I try to comfort myself that Ella died peacefully in her sleep.”

The two heartbroken mums were introduced to each other through Brain Tumour Research after Nicola had already identified Ellesmere, where Ella’s family live, as a suitable location for the walk. They soon discovered other coincidences which convinced each of them that their lost children had brought them together. As well as both having set up Fundraising Groups with ‘Army’ in the name, Aaron’s last holiday was at Greenacres Holiday Park in Porthmadog where Ella’s family are booked to go for a holiday.

Nicola added: “When we were choosing names before our baby was born, Aaron was going to be called Ella if he’d been a girl and when I visited Ellesmere to check it out for the walk, there was a bench by the lake with Aaron’s initials AW carved into it.”

Sophie said: “Our paths were meant to have crossed. I hope we can raise lots of money and help bring hope to families in the future whose loved ones are diagnosed with brain tumours.”

The 5km Walk of Hope, one of 11 taking place for Brain Tumour Research on 30 September across the UK, will go around a lake, known as the Mere, on a route not normally available to the public. It will take in views of gardens, woodland and historic parkland on the edge of the market town of Ellesmere. Along with the Boathouse restaurant, a visitor centre and the Cremorne Gardens, there will be a festival vibe on the day with food stalls, craft stalls and activities to keep the kids entertained. Aaron and Ella’s families are calling on others to join them and will welcome dogs on leads too.

Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.

Melanie Tiley, community development manager for Brain Tumour Research said: “We are very saddened to hear how Aaron and Ella’s families have suffered. To lose a child is devastating, knowing you’ll never see them grow up, or find out what was in store for them in the future.

“We are grateful that Ella and Aaron’s families have been moved to set up Fundraising Groups to create a legacy for their children and to help us in our work.

“Brain tumours are indiscriminate and can affect anyone at any age. With one in three people knowing someone affected by the disease we’re determined to change this. It’s only by working together that we will be able to improve treatment options for patients and ultimately find a cure.”

Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.

To join a Walk of Hope on Saturday 30 September 2023, visit walk-of-hope.org.