Kirkcaldy girl’s TV appearance to tell her narcolepsy story

Chloe Glasson and her mum Rebecca Malone in the Channel 4 documentary 'The Kids Who Can't Stay Awake'.
Chloe Glasson and her mum Rebecca Malone in the Channel 4 documentary 'The Kids Who Can't Stay Awake'.
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A teenager from Dysart who developed narcolepsy after receiving a vaccine injection, was featured in a television programme this week.

Chloe Glasson (16) appeared in the Channel 4 documentary ‘The Kids Who Can’t Stay Awake’ which focussed on three children who ended up with the chronic sleeping condition after being vaccinated for swine flu.

Chloe Glasson

Chloe Glasson

Chloe, a pupil at Balwearie High School, was given the Pandemrix injection in November 2009 when she was 10 and her mum, Rebecca Malone, said there was no warning given that there could be any potential danger, and it became clear very quickly that something was wrong.

She said: “Chloe began falling asleep all the time anywhere we went. I was thinking that she was just staying up too late or that it was something else.

“I didn’t think for one minute that there was something wrong with her.

“Then she started falling asleep at school. She was trying to conceal it but it was happening all the time.”

I faced up to what was wrong and I came back up and I was happier within myself and people around me

Chloe Glasson

Chloe was initially misdiagnosed and just when the family felt they were at a dead end they managed to see a consultant who diagnosed narcolepsy and cataplexy, which is severe muscle weakness.

Rebecca said: “Chloe’s form of narcolepsy is at the severe end of the scale. She can fall asleep up to 30 times a day.

“It’s a lifelong condition for which there is no cure. She has automatic behaviour, hallucinations which are frightening and sleep paralysis - it’s not just about the actual sleeping.

“She doesn’t sleep properly during the night, she can’t ever be on her own and she also misses a lot of school.”

Chloe struggled to cope initially and at her lowest point tried to commit suicide aged just 14, but says it was a turning point.

“After that happened I faced up to what was wrong and I came back up and I was happier within myself and people around me.”

Chloe has a lot of help and support from her friends - “I can’t put into words how amazing they are” - and hopes that the documentary, which was transmitted on Tuesday night, and which she describes as “incredible” will help raise awareness of the condition. She now aims to go to university and hopes to become a director.

Rebecca added: “We wanted the documentary to tell the story and for it to be real.”

“There are hundreds of families going through the same thing all across the world, but one thing that’s hugely important that I hope comes from the film is that you need to know that what you are giving your children by way of a vaccination has been properly tested.”

‘The Kids Who can’t Stay Awake’ is repeated on Friday at 1.45 a.m. and is also available on 4 On Demand.