22-year-old Beth Goodier suffers a rare condition that causes her to fall asleep for months on end, with her longest sleep episode lasting six months.
Shortly before her 17th birthday, Beth fell asleep on the couch and, for 6 months, would sleep 22 hours a day, only waking in a dream-like trance to eat, drink, and use the bathroom.
Over the past year, Beth’s mom Janine believes that her daughter has been asleep for 75% of the time. It’s due to a rare condition known as Sleeping Beauty syndrome, or Kleine-Levin syndrome.
Beth’s hopes of finishing university and becoming a child psychologist have tragically been put on hold. She’s currently two-and-a-half months into another deep sleep episode, in which nothing — not drugs or loud noises — will wake her.
When Beth does leave the house, she is often too tired to walk and requires a wheelchair. All mom Janine can do is wait for the ‘on’ switch to flick back in her daughter’s head.
“It’s like night and day,” explains Janine, “She might wake up tomorrow and then it’s a race to live the life she should have had. She rushes off to catch up with friends and get her hair done. But no one knows when she might fall asleep again.
Single mom Janine has had to give up her job to care for her daughter, as, when Beth wakes, she is often confused and unable to speak.
“The most horrible symptom is her confusion. When she wakes for a few hours a day, she does not know where she is and becomes very agitated.”
One evening when Beth fell asleep, Janine tried to wake her and was horrified when Beth could only babble incoherently in the voice of a child.
Doctors believe that Beth’s condition was triggered by tonsillitis, which may have set off an inflammation in her brain, damaging the areas responsible for sleep and sensory output.
Normally, Beth’s “awake time” lasts around two weeks until she suffers another sleep episode. When she wakes up she is unaware that she was ill, or that time has moved on.
“Each time, you pray she’s had her last episode — and then your heart sinks as you see the signs coming back. Her voice regresses, she starts to find light and noise too much, and then she’s gone again,” says Janine.
“It breaks my heart to see the best years of her life slipping away.”
All Janine can do is watch and wait for her daughter to resume a normal life, as symptoms usually “burn out” in a sufferer’s mid-2os.
“One day, I want Beth to be able to travel, have a family, to go back to university, to be the woman she was meant to be,” says Janine.
“When I watch her, I think of that quote: ‘Let her sleep, for when she wakes, she will shake the world’.”