Milton Keynes Hospital nurse fighting to save her son's life

Initial prognosis gave Dean Mandabva just twelve months to live but he is holding on and now fighting for his life.

Dean’s parents David and Mercy are both NHS key workers from Buckingham, who are working on the front line in the fight against Covid-19 - Mercy is a stroke nurse at Milton Keynes University Hospital and David works at the Luton and Dunstable University Hospital.

In June 2019, Dean, a bright, clever, football-loving 11-year-old, collapsed at school whilst playing football.

After taking him to Milton Keynes A&E, his parents were told that their young son‘s life could be cut short due to a high grade Diffuse Intrinsic Pontine Glioma (DIPG) – a tumour in part of the brainstem that controls blood pressure, eye movement, breathing, swallowing and heart rate. DIPG is the deadliest form of childhood cancer.

Dad David explained: "In early June 2019, our bright, brilliant, young boy who was full of life and love fell at school while playing football.

"My wife and I took Dean to Milton Keynes A&E where our nightmare began.

"Dean's life could be cut short due to a high-grade Diffuse Intrinsic Pontine Glioma (DIPG) – a tumour of the brainstem which is the part of the brain that controls blood pressure, eye movement, breathing, swallowing and heart rate. It is the deadliest form of brain cancer among children.

"Following MRI and CT scans and tests, Dean was transferred to the John Radcliffe Hospital in Oxford where we were informed that Dean’s tumour was inoperable.

"The only treatment available to Dean on the NHS was radiotherapy. Dean underwent 30 sessions of radiotherapy and his cancer went into remission in June 2019 allowing him to return to school and play football with his friends.

"Eight months later in February 2020, Dean complained of blurred vision. After further MRI scans/ tests and hospital appointments we were told his tumour had come back and had spread to other areas of his brain.

"We were told there was no further treatment he could be given on the NHS and Dean was offered palliative care to keep him comfortable in a hospice."

The irony for David and Mercy, who care for people every day at the NHS, is that they can’t help their own son through the NHS.

Through extensive research they discovered clinical trials available in America - but Covid-19 travel restrictions mean it is impossible for Dean to travel there.

Undeterred, they discovered that Dendritic Cell Therapy (a form of immunotherapy involving a cancer vaccine made from your own blood) is available in Germany and Spain.

The treatment will hopefully shrink the tumour and give Dean the chance to live a normal life, play again with his friends and live into adulthood.

But the treatment will cost £50,000, a figure that David and Mercy just can’t afford.

Now the family, backed by Moretonville JFC U11 Rovers, the team Dean plays for, has launched a campaign to help them raise the money to give Dean a chance at life. And incredibly the appeal has raised almost £10,000 overnight.

Tom Marshall, Moretonville JFC U11 Rovers Manager, said: “It’s been a pleasure to coach Dean over the last year, his sense of humour is brilliant and he never fails to make everyone laugh. He always turns up with a smile on his face and wanting to learn.

"You can see by the pure joy on his face how much he loves football and more importantly how much he enjoys being able to play with his friends.”

Moretonville JFC Chairman Michael Turnder added: “Dean is a cherished member of Moretonville JFC, a fact perfectly demonstrated by the glowing accolade from his manager, Tom Marshall.

"Youth football is predominately about allowing the players to play with their friends, and importantly, always with a smile on their faces. We are fully supportive of and look forward to ensuring this happens again for Dean as soon as possible.”

Monies raised over the £50,000 target will be donated to the Milton Keynes based charity - Brain Tumour Research - and local charities supporting Dean.

Dr David Jenkinson, Chief Scientific Officer at The Brain Tumour Charity, said: “Diffuse midline glioma (previously called DIPG) is a type of brain tumour that forms in a part of the brainstem known as the pons.

"They affect between 20 to 30 children in the UK every year and there is no effective treatment.

"Diffuse midline glioma tumours are incredibly difficult to treat as they can't be operated on due to their location within the brainstem, a crucial part of the brain that controls vital functions such as breathing.

"Our researchers are determined to understand more about this condition and develop new and effective methods to treat it.”

Charity spokesperson Hugh Adams at Brain Tumour Research said: “It is just not right that treatment for children like Dean is heavily dependent upon access to clinical trials.

"As a charity, we support the ambition for at least 15% of brain tumour patients to be participating in clinical trials by 2025.

"The type of treatment that David and Mercy are seeking for Dean is extremely costly, particularly as it is located overseas. At a time when they are digesting the worst possible news you can receive as a parent, the fact that they are having to self-fund treatment, is unacceptable.

“Funding for research into brain tumours needs to be increased to £35 million a year in order to prevent more families from being plunged into this nightmare, facing the bleakest possible prognosis.

"A basic scientific understanding of the disease is needed to improve options and outcomes and that will only come with increased funding.”

Brain Tumour Research funds sustainable research at dedicated centres 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.

People can support Dean’s brave fight via the GoFundMe page.