Source: Toronto Star

TORONTO—There was nothing sweet about Kaitlyn Terrana’s 16th birthday. And she has virtually no recollection of her last birthday, her 17th, either. She slept through both of them.

At a time when the teenager should be living each day to the fullest, she is trapped in a roughly six-week cycle in which she has no choice but to take to her bed, slumbering for about 10 days at a time.

Kaitlyn has developed an extremely rare condition called Kleine-Levin syndrome, or KLS, and it is stealing her life away.

“Kind of like the day before, I start feeling really tired and it’s really hard for me to focus in class,” she says from her home in Winona, Ont., near Hamilton. “And then after that, I’m just gone for 10 days. I have to sleep, I can’t stay awake.”

Her mom, Kathy Terrana, has to closely monitor Kaitlyn when she experiences one of these sleeping periods, saying her daughter can’t be left alone.

“In the beginning of her episodes, she starts off being very, very tired,” she says. “By late evening I can usually tell that, yes, she is starting an episode, because she doesn’t talk, she doesn’t converse with anybody.

“It’s not very nice to say, but it’s almost like she’s a walking zombie, because when they’re in their episodes they can be walking around but they don’t know what’s going on around them. So there’s no empathy, there’s no feeling whatsoever. She’s in a complete fog.”

Once an episode starts, Kaitlyn can easily sleep 20 or more hours at a stretch, says Terrana, who periodically wakes her daughter to take her to the bathroom, give her liquids and food.

But those meals must be carefully controlled because of another characteristic of Kleine-Levin syndrome — a voracious appetite.

“I monitor her food intake because otherwise she will walk to a cupboard and just binge on anything that’s available,” says Terrana. “It’s like they’re in a starving mode when they wake up. They just eat anything and everything in sight.”

Kaitlyn knows her mom wakes her up to use the bathroom and to eat and drink, but she doesn’t remember anything about those times away from her bed, even though she’s supposedly awake.

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