A 17 year old from Sandhurst, Berkshire, who passed away from an aggressive brain tumour, has been honoured during Childhood Cancer Awareness Month as his family welcomed the news that the Brain Tumour Research Centre of Excellence at The Institute of Cancer Research (ICR), has received a £500,000 funding boost.
Brain tumours account for more than a quarter of all childhood cancers in Great Britain.
This week Ethan Treharne’s mum, Nikki, and other family members placed nine tiles on the Wall of Hope at the charity’s Centre of Excellence at ICR, representing nine days of research they have sponsored this year in Ethan’s memory. The Centre focuses on finding a cure for paediatric high-grade gliomas – the deadliest of all childhood cancers – and the type which took Ethan’s life. The half-a-million-pound investment will help test new treatment options.
Nikki said: “When Ethan was diagnosed there were so few treatment options available in the UK, so we looked abroad for alternatives to try and keep our son alive, and this meant raising tens of thousands of pounds.
“Hearing that the team at ICR is benefitting from this significant sum to help them in their vital work to bring about better outcomes for children and hopefully kinder treatments is such great news, even though it’s too late for Ethan.”
On average 420 children in the UK are diagnosed with a brain tumour every year. One in three children who die of cancer are killed by a brain tumour.
Ethan Treharne died from a glioblastoma (GBM) in November 2021 after initially suffering from severe headaches and slurred speech.
Nikki said: “We had hoped to find a cure within Ethan’s lifetime. Now it’s important to us as parents to keep his memory and name alive. We want to rewrite the future of brain tumour patients and stop families going through the pain of losing a loved one.
“We hope the money we’ve raised, with the help of our super-supportive community, is life changing. It won’t bring Ethan back, but I hope it makes a difference for families in the future.”
Over the course of two years, Ethan had three operations, chemotherapy and radiotherapy and developed epilepsy as a result of treatment.
Nikki said: “Not once did Ethan complain. He stood strong in the face of this awful disease. His attitude to treatment and trying to continue living life to the full left us feeling humbled and amazed. His daily routine of taking 26 tablets split over morning and night regimented his day. He had three alarms set to take a mix of vitamins, chemo, and seizure medication.”
Desperate to save their son when a scan showed a reoccurrence of the tumour, Nikki and Justin searched for alternative options from the standard NHS treatment and paid privately for immunotherapy treatment in Germany. This was helped by extraordinary generosity from friends, family and strangers. However, Ethan became too poorly to continue travelling and had to stop.
Since Ethan’s death in November 2021, his heartbroken family has set up a Fundraising Group called A New Hope for Ethan, which has raised more than £60,000 to date for Brain Tumour Research.
The ICR Centre is working on identifying new treatments, focusing on children and young adults, and will act as a crucial bridge connecting worldwide research and analysing findings which will help inform and enable the setting up of much-needed clinical trials.
On their visit, Nikki, Ethan’s aunt Kari Hunter, his cousin Jacob Hill and family friend Claire Henry met Professor Chris Jones who leads the research team at ICR, toured the labs and spoke to scientists about their work to find a cure for the disease.
Louise Aubrey, community development manager at Brain Tumour Research, said: “We are delighted that the team at ICR has been granted this significant amount of money to further their work in identifying new treatments for brain tumours in children and young adults.
“We are leading the way in researching paediatric brain tumours which affect around 420 children in the UK every year. And we’re really grateful to Ethan’s family for their fundraising in his memory and hope that the visit to our Centre of Excellence at ICR offered a useful insight into all we’re doing to improve treatment options for patients and, ultimately, find a cure.
“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 the devastating disease since records began in 2002. This has to change.”
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 donate to A New Hope for Ethan fundraising for Brain Tumour Research go to www.justgiving.com/campaign/anewhopeforethan
To find out more about sponsoring a day of research, go to www.braintumourresearch.org/fundraise/sponsor-a-day.
