Watch: Family of poorly tot Tommy-Rae says 'more needs to be done' for children with brain cancer

Tommy-Rae Johnson Martin was diagnosed with an embryonal brain tumour after his parents took him to hospital with constipation.

Doctors at Birmingham Children's Hospital said little Tommy was too weak for chemotherapy.

He underwent surgery to 'debulk' the growth, but a recent scan on January 30 showed 'significant and rapid' progression of the right frontal tumour to the left.

Now his family, who live in the Friar Park area of Wednesbury, are on a mission to raise awareness of children and young people with brain cancer, saying more can be done. Shocking statistics by Brain Tumour Research say someone in the UK is diagnosed with a brain tumour every two hours.

Tommy's mum and dad, Romanie Lawley, 21, and Jack Martin, 23, and his grandma Emma Taylor, spoke to the Express & Star about their fight for their little boy's cause.

"The chance of survival with a tumour like that is zero," Emma said.

"Why is that? In seven weeks we've seen about 35 kids ranging from newborn babies to 18-year-olds. They shouldn't be doing that. Breast cancer, screenings, every other aspect of cancer is covered, so why not these kids?

"They need more research. And if there is no funding, there is no research.

"You've got a four-year-old who loves the ocean, he could've been a marine biologist. He could've been saving you in 20 years' time. But no. Because there's nothing there for him, no awareness, here we are.

"If there's anything that babby deserves, it's to raise awareness for somebody else. So that is our mission."

Romanie spoke of her animal–loving son, while cradling her newborn baby girl, Esmeralda.

"He's got loads of favourite animals, he's got a bearded dragon, dogs, horses, chickens.

"We knew from a young age, when I was pregnant with Tommy we had a dog, and Tommy's had a dog every year since."

"He could tell you more about the ocean than anybody in this room, his teachers can't believe it," Emma added.

Dr Laura Danielson, children's and young people's research lead at Cancer Research UK, said: "Each year in the UK, around 420 children are diagnosed with brain or central nervous system tumours. Thanks to research and the progress that has been made, some of these children will have a good chance of surviving their cancer.

"But, as Tommy-Rae’s story shows, there are some types of children’s brain tumour that remain incredibly difficult to treat. Only by working together and funding more research can we bring hope to families where currently there is little.

"As the UK's largest charitable funder of research into children's and young people's cancers, we're committed to making this happen. We're funding research across the UK to better understand the biology of children's brain tumours and discover new and better ways to diagnose and treat them.

"Our Cancer Research UK Children’s Brain Tumour Centre of Excellence brings together international experts to transform the way treatments for children's brain tumours are developed and our Cancer Research UK Clinical Trials Unit in Birmingham coordinates many of the children's brain tumour clinical trials in the UK.

"It's only thanks to our supporters that we're able to fund the research that's so vitally needed to shift the dial on these hard-to-treat cancers.

"We are incredibly grateful to Tommy Rae’s family for choosing to raise money for us at this difficult time. Donations like theirs mean we can keep pushing for a future where every child can live a longer, better life, free from the fear of cancer."