‘Living hell’ for parents of four-year-old boy nicknamed ‘Mr Happy’ who was diagnosed with terminal brain tumour

A mum and dad whose four-year-old son was diagnosed with a terminal brain tumour after having trouble walking, showing signs of anxiety and falling down the stairs have said their lives are a “living hell” but they must “have hope and believe that there is some way through this”.

Ellie Thompson, 38, an editor at My Baba and freelance copywriter, and Jamie Thompson, 42, a senior project manager, who live in Great Bookham, Surrey, with their children, Billy, four, and Maddie, six, thought their son had separation anxiety when he started school.

Billy then struggled to walk, and after he fell down the stairs, Jamie, who had encephalitis as a child, suspected he had a brain tumour and rushed him to A&E.

After scans, Billy was diagnosed with inoperable, terminal diffuse intrinsic pontine glioma (DIPG) which, according to the Brain Tumour Charity, is a grade four brain tumour found in children and has an average survival rate of less than a year.

Ellie told PA Real Life: “The consultant told me the diagnosis and he started crying because he had a son the same age.

“He told me that it was inoperable but he could have treatment to hopefully extend his life. His words when we asked what the prognosis was, well, there was just one – ‘dismal’.

“It’s a living hell, and it’s dark, really dark, the days keep passing but the nightmare doesn’t end.”

Ellie gave birth to Billy on April 15 2019. He had a “rough start” as he contracted a urinary tract infection and a staph infection while being treated in hospital, but he remained Ellie and Jamie’s bundle of joy.

Billy continued to be upbeat and was “very excited” about starting school.

But, in September 2023, Ellie and Jamie began to feel like something was not quite right with Billy, and thought he might have irritable bowel syndrome as a result of a food intolerance or separation anxiety, as he was frequently complaining of stomach pain.

From then until mid October, the pair took Billy back and forth to the GP to see what was wrong, but did not get any answers.

Ellie said: “I had a call from the school saying he was unsteady on his feet.

Jamie added: “I remember us being in the kitchen and I said to Ellie, ‘I think he might have a brain tumour’.

“So straight away we took him to the doctor and relayed our fears to him, along with all of his symptoms, which at that point also included a habit of sucking on his jumper and his sleeves.

The GP conducted a simple physical examination, and Jamie and Ellie were told that a brain tumour was out of the question.

So the pair left the doctors with a link to the health visitor’s website to follow up on the anxiety.

“The next week, Billy fell down the stairs and it was clear something was not right, so Jamie took him to A&E.”

On arriving at the hospital, Jamie “broke down in tears” because he was so worried about his son.

“I broke down and because I was so upset, the nurse said they would give Billy a brain scan to rule out the worst possibility.”

Billy had two CT scans and an MRI scan, leading to the diagnosis of diffuse intrinsic pontine glioma.

Jamie said: “His age is a blessing and a bit of a curse.

“At the moment, we’ve given him and his sister limited information – they know he is ill and he has wobbly legs. We want to shield them from the gravity of the situation for as long as possible.

“It’s something we never, ever thought we’d have to tell our children, but we will find a way when the time comes.”

At the beginning of November, Billy began radiotherapy treatment.

“Earlier this week, he woke up distressed in the middle of the night, screaming about the mask being too tight for his face, and that he couldn’t close his eyes, the lights were too bright. But despite that, he continues to battle through it.

“I just can’t believe how amazing he is.”

Billy has also had a biopsy and is awaiting results.

“We just have to hope.”

Although Billy is too unwell to attend school, he was awarded a bravery certificate by his teachers, which he was thrilled with.

Ellie said: “Clinical trials for DIPG have started opening in the UK after lobbying by various charities, and enabling more of these to take place in the UK will bring hope to other sufferers and take away the burden and stress of trying to access trials in other countries.

“UK parents have had to travel to Germany and pay high costs to source one of the most promising drugs in this area.”

Ellie said: “It’s just amazing to know how much Billy and ourselves are loved.

“We’ve had anonymous donations of £20,000, it’s unbelievable.

Speaking about the future, Ellie said: “It changes minute by minute, and the nighttimes are really bleak.

“We have to have hope and believe that there is some way through this, because, what else can we do?”

To donate, visit: justgiving.com/crowdfunding/Billys-Journey.