Little Rastrick schoolboy paving the way in fight against dangerous condition

A Rastrick schoolboy and his family are leading the way in raising awareness about a life-threatening condition.

By sarah fitton
Tuesday, 12th July 2022, 1:58 pm
Updated Tuesday, 12th July 2022, 2:01 pm

Four-year-old Charlie Pilling needed brain surgery when he was just a baby after he was diagnosed with hydrocephalus.

It is estimated that 1 in 770 babies will develop the condition each year and there is currently no cure, only invasive treatment. If left untreated, it can cause brain damage or even death.

Early detection is incredibly important, as a child is able to access specialist medical care more quickly - but not that many people know what to look out for.

Charlie Pilling with his mum Emma and dad Matthew

“The first time I’d heard of hydrocephalus was on the day they were prepping my son for surgery,” said Charlie’s mum, Emma.

She and Charlie’s dad, Matthew, had raised concerns about the size of their son’s head with their doctor soon after Charlie was six months old.

By the time he was diagnosed, he needed a shunt fitted and has been left with multiple complex needs.

“His life shouldn't be this hard and it is hard for him,” said Emma.

The family have taken their fight to the House of Commons

“He is the most resilient and tenacious little boy. One former carer said he puts the sun in sunshine. He’s very smiley and has a very strong personality.”

Charlie and his family are working with Harry’s Hydrocephalus Awareness Trust to campaign for more medics and parents to be educated about the condition and told the importance of plotting the head circumference of infants - a key indicator of hydrocephalus.

They even visited the House of Commons to talk to MP Michael Gove about the issue.

People think because they haven’t heard of it, it can’t be that serious,” said Emma.

“We want more recognition for parents and professionals because if I knew then what I know now, I’d have shouted louder.”

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