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A family friend spotted five-year-old Samuel Bourdillon's deadly brain tumour symptoms just in time
00:01, 07 February 2016
The parents of a five-year-old boy have spoken from his hospital bedside to say they owe their son’s life to a childhood friend.
Paul and Karen Bourdillon feared cricket-mad Samuel might have dyspraxia after he started to lose his balance and knock things over.
But after seeking advice from close friend and physiotherapist Sue Francis, the symptoms soon started to add up to something far more sinister – Samuel had a brain tumour.
Within a week he was being operated on at King’s College Hospital in London, where surgeons said he was lucky to be alive.
“It all happened at once,” Paul said.
“We both thought we were going to lose him. When we got to the hospital the neuro-surgeon said we had just caught it in time.
“He said Samuel would have been dead within days.”
Paul, 51, and Karen, 43, who live in Chartham, say they noticed Samuel’s balance beginning to worsen last year.
He also suffered occasional headaches, lost his appetite and developed dark rings under his eyes – but it was only when putting the symptoms together did they fear something more serious.
“We noticed he started to trip over a lot,” Paul said.
“It got worse over a period of about three to six months and we thought it could be dyspraxia.
“I phoned a childhood friend, who’s a physiotherapist, to see if she thought the same.
“She told me to talk her through any other symptoms so I racked my brain.
“It was only when I was putting together a list that I started wondering if there was something more serious going on.
“My friend said ‘this could be a brain tumour’ – get him to a doctor’.”
Samuel’s GP referred him to a paediatrician. He underwent a brain scan just days before his fifth birthday and the results were sent to a consultant at King’s.
Paul recalls: “He said you need to get him in an ambulance now. We’re operating tonight.”
By 6pm that day Samuel was in surgery undergoing an operation to relieve the excess fluid on his brain.
Two days later the tumour was removed by consultant neuro-surgeon Bassel Zebian.
“It was a huge shock for us,” Paul said.
“The surgeon told us we were very lucky our friend had spotted the signs when she did.”
Doctors were able to remove 90% of the tumour, which was benign, but Samuel still faces a long road to recovery after developing a post-operative condition called posteria fossa syndrome (PFS).
The trauma robbed him of his motor neurone skills, and he is still unable to talk.
“It’s a very mysterious thing,” Paul said.
“They don’t know what causes it and you can never tell which patients are going to get it. And once you do have it you can never tell how long you’re going to be in rehab.
“It could be days, weeks – Samuel’s is likely to be months, but hopefully not years.
“He had to re-learn all his motor skills. He couldn’t even lift his arms.
“He can walk about 40 or 50 metres now without support, but he’s still not speaking.”
Not hearing their son’s voice for three months is a hard pill to swallow for his devoted parents.
“It’s been the most difficult thing for us and him,” Paul said.
“When I listened to his voice on a video the other day I’d almost forgotten what it sounded like.
“It’s hugely frustrating for him because he can’t tell us what he wants and sometimes we can’t understand what he’s trying to say.
“We’ve had some difficult times.”
Those hard times were tempered by a visit from diving star Tom Daley, who lost his own father to a brain tumour.
He even invited Samuel to watch him in action at the Olympic training pool in Stratford.
“It was an extremely nice thing for him to have done,” Paul said.
“Samuel really enjoyed it and it was good to see him back in the water.”
It is hoped Samuel may be discharged from hospital tomorrow (Friday), with his parents lining up a trip to Centre Parcs as a treat.
But he then faces a gruelling four-month spell at a specialist brain rehabilitation centre run by the Children’s Trust.
Zimbabwe-born Paul, who taught music at Kent College after moving to the UK, hopes to turn the experience into a positive.
He and Karen, who is the director of music at Folkestone School for Girls, have set up an online appeal to help fund an awareness campaign.
Paul said: “The UK has one of the worst records in the western world for early diagnoses of childhood brain tumours and we want to do what we can to change that. We want to work with charities to run an awareness campaign so GPs, parents and teachers recognise that if there are more than one of the symptoms then children should be referred for a scan.
“The earlier you can pick it up, the better the chances are for the child.
“Samuel is such a brave boy and is doing incredibly well, but it could have been a completely different story if not for my friend recognising the signs.”
The campaign has already raised more than £14,000.
To make a donation, visit the crowd funding page or email.
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