NEW CASTLE —
Nicole Delien’s mom hopes that for her daughter, 2012 will be a Christmas to remember.
However, that could be a tall order. Nicole can recollect only three of the past 10 Yuletides.
The 17-year-old former New Castle resident suffers from Kleine-Levin Syndrome. When an episode strikes, she will sleep between 17 and 19 hours a day for anywhere from 32 to 64 days.
Because of that, the condition sometimes is called Sleeping Beauty Syndrome.
“But this is no fairy-tale disease,” said Nicole’s mom, Vicki, who lived in Mahoningtown with her daughter before moving to Pittsburgh in November 2002. “She cannot get up, she can’t dress herself, she can’t put her makeup on, can’t do her hair or bathe herself.
“She misses big chunks of life. She’s missed a lot of Christmases and Thanksgivings due to this. She’s only been able to attend three Christmases out of the last 10 years.”
During an episode, Vicki Delien said, her daughter will get up to go to the bathroom, and she will eat. However, Vicki describes these periods as a “sort of sleep-walking mode.”
“Her eyes are all glassy, in a daze; she doesn’t know what’s going on around her,” Nicole’s mom said. “And she tends to eat a lot. She’ll go to the fridge and whatever she’s craving at the time, if it’s right in front of her, that’s what she’s eating, no matter what the amount is.
“One time, she ate almost three pounds of fudge. I try to feed her sometimes, but even if it’s something she likes, she might say, ‘Ew, I don’t like this,’ because at that time, she might be craving something else.”
Nicole was just six years old when her first episodes struck. At the time, they would reduce her to an infantile state lasting five to seven days.
Doctors were puzzled, and in the end, it took 25 months before one Pittsburgh physician finally hit upon Kleine-Levin Syndrome.
That’s the main reason that Nicole, Vicki and her husband, Harry, will appear at 4 p.m. today on The Jeff Probst Show. The syndicated talk program, which airs on WMPY My Pittsburgh TV, will be featuring people with rare diseases.
“I just want people to be aware of this,” Vicki said. “It took us 25 months to find the right doctor to diagnose her with Kleine-Levin Syndrome.
“I know there are so many other families out there going through the same thing, being told that it’s bi-polar or that it’s just being done for attention. That is not the case. This is a true sleep disorder, and people need to know it exists.”
Nowadays, extended periods of sleep have replaced regression as the syndrome’s primary symptom. However it has manifested itself, though, KLS has impacted Nicole’s family as well as the teen herself.
“I’ve put myself through school and I’ve lost externships over this, even jobs,” Vicki said. “I can’t hold down a job because I need to be here for her. We’re now a family of five with one income.
“When she does go into these episodes, we become almost homebound because it’s hard to get her up and get out of the house for any family activities or for activities my other children are in. It’s hard and it puts a lot of stress on the younger two kids (7-year-old Cameron and 11-year-old Savannah) as well.”