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Glasgow Live
Glasgow Live
Health
Steven Rae

Family anger as five-year-old boy's deadly brain tumour undiagnosed for two years

A family have been left "angry" at medical professionals after a five-year-old boy's brain tumour went undiagnosed, despite two years of symptoms.

Cole Barrie began getting migraines when he was only three, they became so bad he was physically sick.

He was later diagnosed with medulloblastoma, the second-most-common brain tumour type in children, the main symptoms of which are sickness and migraine.

Worried mum Michelle Barrie, 36, was told to have Cole's eyes tested, and then to remove gluten and then dairy from his diet.

Cole was finally given his proper diagnosis on March 24 this year after an MRI scan. By this point, the tumour was so big his head was visibly swollen, and has now developed tumours on his spine.

He will receive chemotherapy and radiotherapy, but this will only lengthen his life by a few years, if successful.

Close family friend Gillian Howard is helping raise money to help support Michelle, who has had to give up her job to care for little Cole.

The 35-year-old, whose daughter Ellie is a pupil at Lenzie Meadow Primary School with Cole said: "It's quite confusing because one doctor told Michelle that Cole was terminally ill, on the day of the MRI, and then another doctor told her, 'there's hope'.

"It's confusing because no one has actually sat down and told Michelle exactly what is expected to happen to Cole, his full prognosis or life expectancy.

Cole in hospital. (Gillian Howard)

"The doctors have to do something because he's only five, so that's why he'll go through the chemotherapy and radiotherapy.

"In July, after the radiotherapy, they'll do another MRI, and if the treatment's not working, then that's when a decision will be made on what's going to happen, moving forward.

"The hope is more to give him an extra few years, if they can manage to stop the tumours from growing, because it's very, very aggressive. But there's no chance of him making a full recovery."

Gillian added: "Cole's family are angry, they're absolutely fuming he wasn't diagnosed properly, earlier.

"They just feel so let down, by GPs, by the Royal Hospital for Children in Glasgow. He wasn't even seen by his GP, it was all through phone calls and video calls."

Gillian raised £7,600 to help the family. After Michelle bought Cole new clothes, which he needed because of his dramatic weight loss, and other essentials, there was around £5,000 left.

A second fundraiser has also now been launched by another family friend to help them cope financially.

"The rest of the money has been put to the side to pay for Cole's funeral," said Gillian.

Michelle shaved her head so she and Cole were the same. (Gillian Howard)

"We've said it will be for the holiday of a lifetime if he's well enough to go on one, or to give him the best send-off ever, if he isn't.

"He was unable to use his legs at one point - he just couldn't stand up. He's in a wheelchair now and doesn't really get off the sofa. Michelle has to help him go to the toilet.

"The tumours on his spine have been described as like a powder sugar coating all over his spine. So they can't remove them or do anything about them. That's what's affecting his ability to walk - he's very, very wobbly on his feet.

"And he's got muscle damage and waste because he's not using his muscles so he's very weak.

"One of the tumours in his brain leans up against the part of the brain that deals with hunger and sickness. So, he doesn't feel hungry and he's sick all day, every day.

"And he's on a feeding machine, 24 hours a day. Because he's not eating that's adding to his tiredness, and with him lying about, his legs are just really weak as well.

"It's heartbreaking, it's absolutely heartbreaking, because he's only five. Nobody that age deserves to be going through what he is.

"Michelle isn't taking in any negative aspect of what's going on. She's remaining very focused on hope. Just now she's just very, very hopeful that things are going to get better.

"My little girl is the same age as Cole, they started school and nursery together. So we go round whenever he gets home from the hospital.

Cole with best friend Ellie, Gillian's daughter. (Gillian Howard.)

"As soon as he sees Ellie he's very excited and up, that's the only time he'll get up and walk, because he has somebody to play with."

Michelle has decided not to tell Cole the full extent of his illness, saying that "there's a sickness in his brain, and the doctors are trying to make that better".

The family also have support from Michelle's daughter Chelsea Park, who is 18, grandson Tyler, and sister Lisa Park.

Michelle's parents, Janet Grant and Stephen Park, also help as much as they can. Stephen is the only person who visits Cole in hospital due to infection control.

Cole with his granddad, Stephen Park. (Gillian Howard)

Gillian added: "It's horrible. I'm just glad that Michelle has such a supportive family, and Cole is just a warrior, he's just taken it all in his stride.

"He's still laughing and joking and singing away, even though he's going through what no child should have to go through."

An NHS Greater Glasgow and Clyde spokesman said: "While we do not comment on any individual patient or the treatment they receive, we would be happy to discuss any concerns the family might have with regard to Cole’s care."

To donate to the fundraiser for Cole and his family, visit his JustGiving page.

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