Bereaved parents from Faversham and Whitstable back groundbreaking child brain cancer trial

by Gerry Warren

gwarren@thekmgroup.co.uk

Two Kent families who lost young children to devastating brain tumours are helping fund a major international trial that could one day save others from the same heartbreak.

Sarah and Ben Pullen, from Faversham, and Emma and Dean Giles, from Whitstable, know all too well the agony of being told there is no cure.

Eva Giles, who died from a brain tumour aged five

Their children, Silas and Eva, both died after being diagnosed with aggressive brain cancers that strike without warning and give families little time to prepare for the worst.

Now, determined that no other parent should face the same hopelessness, they have joined forces with The Brain Tumour Charity to support a new £1.5 million clinical trial into childhood brain cancers.

The CONNECT TarGeT trial – the first of its kind on this scale – will see children and young people aged one to 25 offered personalised treatment plans based on the genetic make-up of their tumour.

It is being coordinated by the University of Birmingham and will run in NHS children’s cancer centres across the UK as well as in the USA, Germany, the Netherlands, Australia and New Zealand.

For Sarah and Ben, the trial represents hope for other families.

Silas Pullen, who died from an aggressive brain tumour in 2014, aged 11

Their son Silas was just 11 when he died from a high-grade glioma in 2014, 16 months after his diagnosis.

In his memory, they set up The Silas Pullen Fund, which last year became the first supporter group to raise more than £1 million for The Brain Tumour Charity.

Then in 2016, Sarah wrote a book that laid bare her intense heartache and her family’s unimaginable journey.

Sarah Pullen, from Baddlesmere, published a book on the loss of her son, Silas, to a brain tumour.

Called ‘A Mighty Boy’, it tells the tragic but inspiring story of "bright and beautiful" Silas Pullen through his mum’s eyes, which lifted the lid on the unbearable pain of losing a child.

It was a raw and honest account of every parent’s worst nightmare, and all the profits from sales went into the fund in Silas’s memory.

Silas Pullen who died from a brain tumour, aged 11

Sarah said: “There remain very few treatments for paediatric brain tumours and this exciting and truly ambitious trial aims to change this by offering treatments tailored to each child’s individual tumour.

“We hope that, ultimately, every child diagnosed with a high-grade brain tumour in the UK will be able to benefit from this ground-breaking personalised approach offering their families much-needed hope.”

“We were thrust into a world we could scarcely imagine…”

Among the other funders is Eva’s Angels, the charity set up by Emma and Dean Giles after their daughter Eva died aged just five.

The charity raises money for research and provides short seaside breaks for families affected by childhood cancer, offering them moments of calm amid chaos.

Emma said: “In April 2016, an emergency MRI revealed the heartbreaking truth - Eva had a brain tumour, and not just any tumour, but DIPG. We were thrust into a world we could scarcely imagine.

“The following months became a whirlwind of hospital appointments and radiotherapy planning.

“Over two weeks, we had to watch our small, scared little girl endure the daily ordeal of having her head bolted to a table while radiotherapy waves penetrated her head, all in the hope of buying us more time.

Mum Emma Giles with Eva who died in 2017, aged five

“But it was only time – we were told we would be 'lucky' to get months with her. There was no cure. We were going to lose our beautiful five-year-old daughter, and there was nothing anyone could do to stop it.

“This is why we are committed to funding vital research until we physically can't fundraise anymore.”

Life expectancy for children diagnosed with tumours such as Diffuse Midline Glioma is just nine to 12 months. For the families who have lived through that reality, progress cannot come soon enough.

Dr Michele Afif, chief executive at The Brain Tumour Charity, said: “This clinical trial is a beacon of hope, demonstrating that much-needed change is possible.

“We’re immensely grateful to all those who have helped us to get to this point, particularly those who have worked so tirelessly to raise the money needed to open CONNECT TarGeT and the researchers who have driven this initiative forward.”

Between them, the Kent charities The Silas Pullen Fund and Eva’s Angels – along with others including The Albie Sugden Foundation, Shay’s Smiles and Joss Searchlight – have contributed more than £790,000 to help launch the trial.

To find out more or support the research, visit thebraintumourcharity.org.