‘We want to help more children to have fun’: Peterborough brain tumour charity marks tenth anniversary of specialist rehab team

Brainbow, a pioneering regional rehabilitation service which helps children with brain tumours, is set to mark its tenth anniversary.

The service, which is based at Addenbrookes Hospital, was initially conceived by Carole Hughes, who launched it alongside her husband Rob in 2013.

Carole and Rob are also the founders of Anna’s Hope, a children's brain tumour charity they set up following the tragic death of their three-year-old daughter Anna, who died from a brain tumour in 2006.

Anna’s Hope started just six weeks after the courageous little girl – who endured more than 15 months of chemotherapy – passed away.

Describing Anna to the Peterborough Telegraph, Carole said: “She had lovely blonde hair” and “loved fairies.”

The former swimming teacher also recalled how her little girl “kept a constant smile on her face, even though she was in pain, because she always thought of others.”

Carole said Brainbow was established to ensure rehabilitation after treatment was afforded to “any child [in the region] that has been touched by a brain tumour.”

She explained that, back when Anna was ill, resources were not available in the community for the struggling little girl to get help with tasks like partial swallowing while Anna had to be fed through a nasal tube.

“She wanted to swallow and be normal like anybody else,” Carole remembered.

This led Carole and Rob to conclude that “a whole system” was needed. And their answer was Brainbow.

Brainbow is a unique partnership between three independent charities – Anna’s Hope, Joshua Tarrant Trust and Tom’s Trust, all of which work with Addenbrooke’s Hospital to deliver the integral services. The service is open to any child under 16 in the East of England who has previously or recently been diagnosed with a brain tumour.

‘Club no one wants to be part of’

Carole explained the set up:

“We are the major funders; we fund the Anna’s Hope therapy team which is physio, occupational therapists, and speech and language. One of the other charities does psychology, and the other does school teaching.”

Brainbow has helped hundreds of children since it began. Indeed, the service has proved so successful that Carole is already looking to expand its reach:

“Going forward, we want to focus more on raising awareness to encourage other regions to support the Brainbow model,” she said, adding for clarification: “Not us going national - just for them to support the model so that they’ve got it.”

As the UK’s biggest cancer killer of children and young people, the task facing Carole, Brainbow and Anna’s Hope is daunting. And yet, Carole’s determination remains resolute.

Carole and her small team of ever-willing volunteers go above and beyond in their efforts to raise funds and awareness of brain tumours, and help those families who are forced to deal with the effects of them.

“It’s a club no-one wants to be a part of,” Carole says, matter-of-factly: “a parent’s worst nightmare.”

And so it is that the self-styled “mum-on-a-mission,” has spent every one of her weekends at fun runs and Parkruns, many of which are attended by volunteers dressed as fairies (in Anna’s honour) raising funds and awareness for Anna’s Hope, for 16 years since the charity was launched in 2006.

Ultimately, it is Anna’s memory – and her legacy – that remains the driving force behind Carole’s visceral resolve.

“I’m doing this in her memory,” she says, “she was a gift of hope.”

And it is that hope which Carole, more than anything, wants to pass on.

“We want to help more children to have fun,” she says emphatically, “and live a life like any other child.”