Do not sleep — you will die: a teenager suffers from the rare "Curse of Undine" syndrome
Liam Derbyshire was born with a very rare disease, due to which he stops breathing every time he goes to bed. Doctors told his parents that he would not live six weeks, but the boy defied the disease and will soon celebrate his 18th birthday.
The disease is named after the legend of the mermaid, who cursed the knight who fell out of love with her.
Undine's curse is a very rare disease. It is estimated that only one and a half thousand people in the world suffer from it. But Liam has one of the most difficult cases: sleep can literally kill him. Every evening, the guy is connected to an artificial life support device so that he does not die in his sleep.
Liam's room looks like a hybrid of an ordinary teenager's room and a hospital ward. "In addition to performing medical functions, this room is still Liam's personal room, where he has a PlayStation, a TV and his son's main hobby is a Lego constructor," says Liam's father, Peter.
Although the sensors in Liam's bed constantly monitor his vital activity, someone has to be there all the time, in case something goes wrong. Taking care of their son proved to be a heavy burden for the family, which spent thousands of pounds on electricity bills and backup energy sources purchased in case the main ones failed, but the parents were able to provide Liam with as normal a life as possible in his case.
"If you ask me if I get a good night's sleep, I'll say no," Peter said. "Frankly, I haven't had enough sleep since the day Liam was born."
In addition, some time ago Liam underwent surgery related to a tumor of the intestine. Now his mother is forced to closely monitor her son's diet. "No one knows exactly how long he will live. If we had listened to some doctors, he wouldn't be alive now," Liam's parents said. "We never thought that he would live for so many years, we are living proof that there is always hope."
The teenager's parents are forced to admit that Liam's mental state does not coincide with how 17-year-olds usually behave. Peter says: "Such ordinary skills for others, like the ability to cross the road, are formed belatedly by our son."
Because of his condition, Liam will never be completely independent, but with the help of his family, he will be as independent as possible under the circumstances.