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I won't let sleeping illness rule my life.

Byline: Catherine Evans

WHEN she used to catch her baby daughter dozing on the sofa in the middle of the day, Maria Jenkins would take a picture to capture the adorable scene.

But today the photos remind her of the undiagnosed condition that could have put little Robyn in danger.

Robyn, now 19, from Brynhyfryd in Aberdare, suffers from narcolepsy, a much misunderstood condition which causes her to fall asleep up to several times a day. Diagnosed at the age of five, she became the youngest known narcoleptic in the UK and has spent the past 14 years learning how to live a normal life.

Like many narcoleptics, she has also had to deal with the associated problem of cataplexy, when a person suffers a complete collapse triggered by sudden laughter, anger or surprise.

Her mother Maria said: "When she was about four I started noticing something wasn't quite right.

"It wasn't just the falling asleep - she would just drop down on the floor. At first I assumed she was being silly all the time, but then she would bang her head and hurt herself when she fell.

"Little things would set her off, like getting ready for nursery or simply laughing."

Robyn now feels in control of her condition and is a catering student at Aberdare College.

"I don't use it as an excuse," she said.

"I'm not interested in meeting any other narcoleptics. Because I've always been narcoleptic and didn't develop it later in life, it's all I've known."

But although she seems unfazed by her condition, it hasn't always been easy for Robyn.

"When the other kids at school cottoned on to the fact that I would collapse if they made me laugh, they would do it all the time.

"I used to hurt myself a bit when I was younger and had to wear this blue hat, a bit like a rugby player's cap, to protect my head.

"But now I have more of an idea of when I'm going to fall and I'll just sit down. And when I need to go to sleep I'll either make myself active or go to my room for a nap. If I'm going to college or to the cinema, I take my medication to stop me getting so tired.

"As long as I have some stimulation and stay active I tend to stay awake for longer."


STUDENT: Robyn Jenkins, Brynhyfryd in Aberdare, with mum Maria PICTURE: Mike Cunliffe
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Publication:South Wales Echo (Cardiff, Wales)
Date:Oct 11, 2008
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