STRANGE BUT TRUE! Meet The 17-Year-Old Boy Who Will Die If He Falls Asleep, This Story Will Shock You

You think sleeping and waking up is normal until you meet someone who meets someone who must not sleep because the day he does, is the day he dies. The question is, how has that person been able to survive.

Meet Liam Derbyshire; a boy who was born with a condition called Ondine’s Curse, officially known as Congenital Central Hypoventilation Syndrome.

This condition causes respiratory arrest due to a patient’s lungs not functioning when they are asleep.

With this condition, Liam has to be plugged into a life support machine and watched by a carer every night to keep him alive.

In fact, when he was born, doctors said that he had just six weeks to live, but to the surprise of everyone, he has lived 17 more years. His parents get to monitor him 24 hours every day, just to be sure nothing goes wrong.

Liam’s parents, Peter and Kim, act as a major part of his caring team and monitor their son 24 hours a day with specialised GPS equipment.

With his condition, it meant that he had to be on a very strict bedtime routine.

His mum, Kim said;

“Central Hypoventilation Syndrome basically implies that when you sleep, your phrenic nerve doesn’t kick in so your brain doesn’t tell you to breathe.

“We rely on a machine to make him breathe and without that, he wouldn’t be alive. If he doesn’t breathe, he dies – that’s it.

“His condition is extremely rare and if we would have listened to some doctors he shouldn’t be alive right now.

“He had the intent for life and so that became our job to make sure he was offered that.”

Liam’s father, Peter takes charge of plugging Liam into the ventilator machine and making sure everything is in order for the carer to sit and watch him sleep.

He said:

“If you ask me if I had a good night sleep the answer is no, not since the day he was born to be quite frank.

“You are constantly on the alert and you worry that perhaps it’s the last time you are saying good night.

“Liam’s sleeping arrangements are the electric bed which has three positions – it can be up or down and the head and feet can be lifted independently in order to give him some quality sleep.

“On the left-hand side, we have all of his ventilator equipment. The idea is that a ventilator supplies positive pressure so that Liam is actually forced to exhale CO2, which normally you or I would [naturally].

“There is also a plate under the mattress that will sense any sort of fitting and then the only way of making sure that he is still breathing is via that type of mask.

“Besides a medical room, it’s also his room and so you have got his PlayStation, the set TV and then Liam’s big forte – his Lego, which is all around the room.”

His father also mentioned that

With regards to Liam’s life expectancy, Peter suggests more research is being done for treatment to Central Hyperventilation but maintains that no one really knows what age Liam could live to.

He said:

“We have gone from nothing towards 18. The future for Liam I would say is, it’s not going to be totally independent.

“I mean to a certain extent he has been protected by his own condition that he doesn’t understand certain things.

“I’m extremely proud of him. I personally would have given up a long time ago.

I couldn’t have lived with the condition he has and put up with what he has with the pain levels.”

His mother also mentioned that;

“Liam is 17, nearly 18, so it’s a big birthday this year!

“He is an annoying, grumpy teenager so he is no different to any other teenager but he does have a sense of humour and he is very caring – he’s got a really soft side.

“You can’t regret anything you have done – we’ve had 18 years of his life so day to day you can’t regret anything.”

One cannot but imagine what a boy like this goes through every day or how he lives his life.

Truly, there are some many things to be grateful for and one of those is the ability to sleep at will and without fear.

Download Edujandon.com News App QR-Code

Edujandon.com - 24/7 News Upda

Developer: Edujandon Enterprises

Price: Free