'We drew strength from how he battled': Remembering 'infectious and smiley' young Charlie who lost battle with a brain tumour

In 2018, two Inskip parents were handed the devastating news that their little boy Charlie had a rare brain tumour. Now after his death two weeks ago, they are keen to keep raising awareness of the condition.

Thursday, 22nd April 2021, 7:00 am

Five-year-old Charlie was remembered last Friday, April 16, by his family, friends and school pals who all turned out in blue at his funeral.

And now dad John and mum Nici say they were overwhelmed by the turnout in Bilsborrow, Lancashire which saw hundreds of people respectfully line down the village streets and pay respects to the little boy who had battled with multiple brain tumours.

Charlie Robinson, 5, passed away on April 7 after being first diagnosed with an Ependymoma stage 2 brain tumour at just two years old.

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5-year-old Charlie Robinson, who was described as 'infectious and smiley'

And last Friday, balloons and banners adorned St Hilda's Church to say a final farewell to little Charlie, who had bravely fought for much of his young life.

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Sea of blue to bid farewell to five-year-old Charlie Robinson

Dad John Robinson said: "Charlie was such an infectious, happy and smiley young boy that people were drawn to. Right through his treatment and some of the most daunting and horrific situations you could imagine, he took it all in his stride and kept fighting.

"The whole family drew a lot of our strength from him and how he coped, determined to never give up. We knew people found his spirit infectious but had no idea that that many people would turn up to remember him.

Crowds gathered to remember Charlie at his funeral, on April 16

"We asked people to wear blue because it was his favourite colour, and it was so heartwarming and overwhelming to see so many faces show their support which gave us strength."

Charlie had endured a number of neurosurgical operations since his first diagnosis, and the family were first told that his tumour was unable to be removed because it was situated in the brain stem.

Not giving up, they sought out surgeon Conor Mallucci at Alder Hey Children's Hospital in Liverpool, who was the only doctor willing to carry out two major brain operations lasting 14 and 16 hours on Charlie.

After having the tumours removed, Charlie and his parents, along with two brothers Harry and Jack spent Christmas in Germany, where the toddler was able to undergo Proton Beam Therapy.

People wore blue and lined the streets of Bilborrow to remember him

But after he relapsed, the family continued to use social media to document Charlie's battle with his brain tumour in a bid to raise awareness and have received an outpouring of loving support from loved ones and strangers across the country.

And pictures of blue hearts were shared all over the Facebook page to show continuous support for the family.

Charlie had eight tumours present when he lost his battle with the disease last month, including one on his spine.

John added: "We started sharing his story online to give other families hope. Just because a health professional has told you there is nothing that can be done, doesn't mean you have to accept it. We weren't happy with it and found a surgeon who was willing to take that chance for our family.

The Robinson family, dad John, mum Nici and brothers Charlie, Jack and Harry

"Charlie's tumours were very aggressive, and we didn't realise they would come back as quickly as they did. We want to raise awareness of the symptoms of a brain tumour and make sure parents know the signs so they have a chance of not suffering as we have.

"We knew something wasn't right with him when he was being sick and kept saying he had a headache, but it is important that people know what to look out for and get their children diagnosed as soon as they can.

"It is one of the most underfunded cancers and one of the main killers of young children with cancer. It was too late for us, but we hope we can help other families who may not have to go through this."

Because of little Charlie's passion and love of the outdoors, this years' Lancashire tractor run is raising money for both the NHS and the Brain Tumour Charity.

Local farmers, truckers and businesses will now drive through Lancashire in 'Charlie's Convoy' on May 7, with over £5,000 already raised of their £10,000 target.

Donations can be made here.

Charlie was first given the diagnosis at age two

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