Milton Keynes mum who lost her young son to a brain tumour stars in hard-hitting campaign to stop the devastation

A mother who lost her teenage son to a brain tumour is taking part in a hard-hitting campaign launched this week by the national charity Brain Tumour Research.

Niki O’Dea Patel from Woburn Sands lost her 13-year-old son Shay in September 2020.

She is sharing her tragic story in the advertisement campaign Stop the Devastation, which raises awareness of brain tumours and exposes the history of underfunding for research into the disease. People are encouraged to donate to help find a cure.

The eldest of her three children, Shay had been diagnosed with glioblastoma multiforme (GBM) 22 months earlier. His desperate family funded treatments abroad, having exhausted the options available in the UK.

Niki, who is 40, said: “We considered ourselves fortunate to be able to access help abroad and are acutely aware that there are so many families who are not able to do this. But the real issue here is that, in this day and age, when you are told your child has cancer you assume there will be something to increase the odds and give you hope. The harsh reality with this tumour is that there are no effective treatments.

"“I can’t believe that funding for research into brain tumours continues to be so poor and that GBMs are still quoted as being rare when we have met so many patients, including children, through Shay’s journey, many of whom have since passed. GBM is certainly not rare and there will be no change and no hope without more funding for research.

"We cannot let another 10 years go by destroying families and taking more and more young children from their parents. We need the general public to take families like ours to their hearts, to get behind us and to make donations in order to help us to increase the national investment.”

The campaign is being launched at Wimbledon and will include outdoor advertising at other prominent sites across the capital. A video is being screened at a series of outdoor festivals aimed at young people and families. An accompanying social media campaign is asking people to join in using #NoMore.

In sharing her story, Niki is helping to raise awareness of the fact that brain tumours kill more children and adults under the age of 40 than any other cancer. Despite this, historically, just 1% of the national spend on cancer research has been allocated to this devastating disease. And, tragically, 88% of those diagnosed die within five years.

Brain Tumour Research, based in Shenley Wood in Milton Keynes has worked with the London-based creative agency bandstand to produce the campaign materials which include a 30-second film together with three 15-second cut-downs for social media.

These will be supported by an integrated social campaign titled #NoMore which is encouraging mass participation with people sharing a selfie of their “stop hand”, donating £5 and tagging five friends.

Spokesman for Brain Tumour Research Hugh Adams said: “Stop the Devastation lays bare the powerful and painful truth about brain tumours – they are indiscriminate, they can affect anyone at any age, there is no cure and for many, sadly, there is little or no hope.

“We are so sorry for the loss of Shay to this terrible disease and extremely grateful to Niki for opening up on camera to star in the campaign. By sharing her heart-breaking story, she is helping us raise awareness and to drive change.

“Brain Tumour Research is determined to make progress by creating awareness of the horrifying statistics, by funding research at its Centres of Excellence and through its continued lobbying of the Government and the larger cancer charities to increase the national spend.”

To donate £5 text NOMORE to 70085. For more information go to www.braintumourresearch.org/stop-the-devastation