Many mother remember and forever cherish the moment they first held their newborn child in their arms. For Jody Robson, a rare disorder prevented her from savoring that momentous occasion.
The 24-year-old mother does not remember the birth of her eldest son because she was in a trance-like state. She believes she has Kleine Levin Syndrome, which is known as Sleeping Beauty syndrome. It is a rare neurological disorder that sees its sufferers sleep for days or weeks straight.
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When she suffers from the bizarre disorder, she can be asleep for 11 days straight. During these periods, Robson can be awoken to go to the toilet or eat, but her behavior is not normal. It’s like she is sleepwalking. The long periods of sleep are followed by weeks of recovery where she feels like she is in a dream. She is unable to hear what people say and has little memory of what happens.
Robson says that during her son Harley’s birth, she was in a trance-like state. She fell asleep immediately after. She woke up two weeks later and had no recollection of his birth.
Because of her condition, she has missed important holidays and birthdays. Her son Harley is now six and her youngest son Riley is three. Professor Matthew Walker of the National Hospital for Neurology and Neurosurgery says that Robson’s symptoms fit the criteria of Kleine Levin Syndrome.
He added that KLS is a very rare condition. He says that it was possible to go into an episode of KLS then not remember what happens. He believes that her story of not remembering her sons birth is entirely possible.
It is common for those suffering from KLS to have little snippets of memories. People with the condition can sleep through almost anything, which has serious consequences in their lives.
Robson’s first experience with KLS was when she was just 12 years old. She went over to a friend’s house for a sleepover and that day she went into a deep sleep and didn’t awaken for 8 days. When she awoke, she couldn’t remember anybody or even remember who she was. She explains that it can take three weeks for her to get back to functioning normally, a period she calls the recovery stage. It is during this time that she sleeps, eats, and does other activities, but she has no memory of the things she does.
Robson is completely reliant on her husband, Steven. He keeps her updated on the events that she has missed. When Harley was born during her trance, it was up to her husband to explain what happened two weeks later when Robson awoke.
She has slept through Christmas and almost missed her wedding. She awoke only days before her big day. It upsets her that she is missing so much of her son’s first years. When she is going through her episodes, her husband is the one who takes care of the children.
She feels as though she is sleeping through her children’s lives. She has missed out on so much because she had seven episodes the year Harley was born.
When she is going through her episodes, her husband has to awaken her at least twice to eat, drink, or use the toilet. She is only awake long enough to fulfill her basic needs. Typically, an episode would consist of a week of sleep and two weeks of recovery. Robson says that the recovery period is the scary part because she doesn’t know if she’ll ever go back to normal.
Despite having episodes since she was 12, she has not yet been officially diagnosed by doctors. The medical condition is so rare, the doctors themselves had to do a lot of research before dealing with Robson during a consultation. She has been tested for epilepsy and narcolepsy both with negative results.
Robson lives her life treasuring every day that she is awake. She knows that trips to the park or spending time at home are moments to cherish. She says that her life is on hold every time she has an episode, and it is frustrating for her to miss so much of their childhood. She just wants a diagnosis so she can seek proper treatment.