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Less than 20% of those diagnosed with a brain tumour survive beyond five years

“I will stop at nothing for Lyla” – Dad appeals for support as daughter faces 9th brain tumour operation

“I will stop at nothing for Lyla” – Dad appeals for support as daughter faces 9th brain tumour operation

The father of a six-year-old girl living with a brain tumour is appealing for help as he vows to create special memories for his daughter in 2019.

Paul O’Donovan’s daughter Lyla has undergone eight operations in the space of three years after being diagnosed with a pilocytic astrocytoma. Her most recent surgery took place four days before Christmas and her family is now facing the prospect of a risky ninth operation later this year.

Together with his wife Kirsty, Paul is determined to make memories for Lyla before she has to undergo any further surgery. He wants to take her to Disney Land, renew his and Kirsty’s wedding vows so Lyla and her siblings can be present, and see Lyla on stage at the Pride of Britain Awards in November. Paul is also helping the Brain Tumour Research charity to raise awareness of the disease.

Paul, who works in the armed forces, said: “The consultants have been putting off fixing the blockage in Lyla’s brain as it will be an extremely risky operation. However, after all the ups and downs of 2018, I fear 2019 might be the year they have to go ahead with it, which is why we’re trying this her best year ever. I will stop at nothing for Lyla.”

Matthew Price, community fundraising manager at Brain Tumour Research in the North East, said: “My heart goes out to Lyla and her family; they have been through unimaginable distress and worry because of this devastating disease. We hope people will support the family and help them make 2019 extra special for Lyla.

“Sadly, Lyla’s situation is not unique and 16,000 people are diagnosed with brain tumours each year – the disease is indiscriminate and can affect anyone at any age. What’s more, brain tumours kill more children and adults under the age of 40 than any other cancer, yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease. This is unacceptable and we cannot allow this situation to continue.”

Lyla was diagnosed with a brain tumour called a pilocytic astrocytoma when she was three years old. She underwent surgery and battled meningitis not long after but began suffering from regular seizures. More surgery went ahead and doctors found scar tissue in Lyla’s brain had fused to a ventricle, causing a blockage and creating an vicious cycle of seizures and surgery.

Despite the endless operations, scans and blood tests, Lyla keeps fighting and enjoys nothing more than going to Bearpark Primary School in Durham and spending time with her brothers and sisters, Reece, Olivia, Lilley and Harry. Lyla and Lilley recently set up the ‘Lyla and Lilley’s Stars’ bravery awards and are busy sending certificates to children all over the country.

Brain Tumour Research funds sustainable research at dedicated Centres of Excellence in the UK; it also campaigns for the Government and the 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 calling for an annual spend of £35m in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.

To support Lyla, go to https://www.facebook.com/LylasJourney1/

To make a donation to Brain Tumour Research, go to: https://www.braintumourresearch.org/donation/donate-now

 

For further information, please contact:
Farel James at Brain Tumour Research on 01908 867221 or 07592 502708 or Farel.James@braintumourresearch.org

 

Notes to Editors

Brain Tumour Research is the only national charity in the UK dedicated to raising funds for continuous and sustainable scientific research into brain tumours, and we are a leading voice calling for greater support and action for research into what scientists are calling the last battleground against cancer.

We are building a network of experts in sustainable research at dedicated Centres of Excellence whilst influencing the Government and larger cancer charities to invest more nationally.

We welcome recent funding announcements for research into brain tumours from the UK Government and Cancer Research UK – £65 million pledged over the next five years. However, this potential funding of £13 million a year comes with a catch – money will only be granted to quality research proposals and, due to the historic lack of investment, there may not be enough of these applications that qualify for grants from this pot.

We want research funding parity with breast cancer and leukaemia. We are calling for a £30-35 million investment every year for research into brain tumours in order to fund the ground-breaking research needed to accelerate the translation from laboratory discoveries into clinical trials and fast-track new therapies for this devastating disease.

The Brain Tumour Research charity is a powerful campaigning organisation and represents the voice of the brain tumour community across the UK. We helped establish and provide the ongoing Secretariat for the All Party Parliamentary Group for Brain Tumours (APPGBT) which published its report Brain Tumours A cost too much to bear? in 2018. Led by the charity, the report examines the economic and social impacts of a brain tumour diagnosis. We are also a key player in the development strategy for the Tessa Jowell Brain Cancer Mission. 

Key statistics on brain tumours:

  • Brain tumours are indiscriminate; they can affect anyone at any age
  • Brain tumours kill more children and adults under the age of 40 than any other cancer
  • Historically, just 1% of the national spend on cancer research has been allocated to brain tumours
  • In the UK, 16,000 people each year are diagnosed with a brain tumour
  • Brain tumours kill more children than leukaemia
  • Brain tumours kill more men under 45 than prostate cancer
  • Brain tumours kill more women under 35 than breast cancer
  • Less than 20% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers

Please quote Brain Tumour Research as the source when using this information. Additional facts and statistics are available from our website. We can also provide case studies and research expertise for the media.

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