A Massachusetts boy’s parents are trying to raise awareness for their son’s debilitating disorder after he was recently diagnosed with a rare neurological disorder called Kleine-Levin Syndrome. The disorder causes him to sleep 16 – 20 hours a day. Some days the boy sleeps 26 hours straight.
Connor Dirks, 13, whose disorder is also known as Sleepy Beauty Syndrome or Rip van Winkle disease, was previously an active boy, playing six sports. The condition often begins during adolescence with a majority of cases being found in teenage boys. While there is no known cure, most patients outgrow the disorder in about 8 – 12 years.
Connor’s parents spoke with WGHP on Monday and said that the hardest part of the disorder is losing their son coupled with the co-morbid aggression that goes along with the disorder. Connor reportedly only wakes up to eat or use the bathroom. Some patients with this disorder have been known to sleep for months at a time.
According to the National Institute of Health, there is no known cause or cure with patients often experiencing behavioral problems and cognitive disturbances in between their sleep episodes.
Connor’s sister said that she just misses her brother because it feels like he’s not even there, he sleeps so much. Connor father says he doesn’t appear to even miss his old life. It’s like he’s blissfully unaware.
The disorder also affects a child’s academic progress because they can’t stay awake long enough to attend school. According to the Kleine Levin Foundation, patients who are afflicted with this rare disorder are unable to care for themselves. The organization warns, “When coming out of an episode be prepared for upset, frustration and anger. Be aware they may not know where they are — they have lost a period of time.”