Boy who dies if he falls asleep

                    

Liam’s mother Kim who begins the documentary stated that doctors believed that he would live up to 6 weeks. Liam Derbyshire suffers from a rare condition called Congenital Central Hypoventilation Syndrome which means if he falls asleep it results to his death. His parents also refer to his condition as Ondine’s curse which is a mythical tale of a fairy that was cursed and was told that if it sleep it would die. 

Liam depends on a machine to live and without it he wouldn’t be alive. His syndrome affects his central and nervous system which controls vital functions such as heart rate and breathing which can dramatically effect your brain. Unlike others Liam’s day is very unpredictable his parents have scares from him having a seizure , collapsing or feeling fatigue. Every night when Liam would like to sleep he relies on a ventilator and a career to keep him alive. His sleeping arrangements are the electric bed .His ventilator is attached to the bed gives him positive pressure to the lungs so they’re forced to exhale. Imagine having a dream of falling off a cliff and waking up with the shock and having to gasp ,that’s what Liam feels like 24/7.h Having this feeling forces the nerves to release but Liam has to depend on a ventilator for this . 

In Liam’s spare time he likes playing play station and Lego which is all around his room. The spectrum of Liam’s mental state is unknown. Although it is uncertain of Liam’s mental state he is still able to compose thousands of Lego models together without any Guidance. He always checks the Lego website too see any Lego that is new to make sure he gets that as his present. He is very caring but is just like any other teenager . He comes from a big family so he’s surrounded by his nephews a lot . The life expectancy for Liam is not known but if parents use this as an opportunity to give him the best love and care that they can. If his parents had listened to the doctors Liam wouldn’t have lived up to this age. “ Liam’s prof that there’s also hope”. 

This is one of those quick roughly 10 minute documentaries that I like to watch . It was one of the most touching and made me realise I take a lot of this I view as normal for granted from just breathing to being able to communicate with others. I admire his parents faith and love for him regardless of what the doctor had said they still preserved and gave him love 

Thanks for reading you can check out this quick documentary on YouTube -https://m.youtube.com/watch?v=6kVpRNlc-8w