Boy who stops breathing when asleep has 'defied all odds'

Video: The boy who could die if he falls asleep

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   >> "curious medicine." this morning a young boy who could die by falling asleep. nbc's peter alexander is here with the details. tough-sounding story.

   >> this is a brave little guy, david. this is among the most rare and hard to imagine 'tis ordmr hard to imagine 'tis ordagine disorders. when you fall asleep your breathing stops. we traveled to england to meet e young boy . with a contagious smile and enough energy to rival any child his age you wouldle never guess liam has been beating the odds.

   >> it's amazing. when he meets people they are drawn in. he's just one in a million.

   >> reporter: in fact, he's more like one in 30 million. you see, liam was born with a bizarre disorder as cruel as it is rare. it's called central hypo ventilation better known as ondim's curse namd after a mythological fairy. when he sleeps, his breathing stops.

   >> you go from a child you believe to be normal when he's born to finding out he has a catastrophic condition.

   >> reporter: most parents are easily exhausted putting their children to bed, kim has to watch her son constantly to make sure he doesn't fall asleep. when driving she uses two mirrors, one eye on the road. the other on her son.

   >> reporter: without oxygen how long can he survive when he's asleep.

   >> probably not long -- an hour.

   >> reporter: he can't stay awake forever and his bedtime routine is unlike any you have seen.

   >> mom and dad will be here when you wake up in the morning as well.

   >> reporter: soons liam lays down to sleep his parents attach a ventilator to keep him alive. someone has to watch him every night.

   >> without the machine my son wouldn't exist.

   >> reporter: when he was born doctors gave liam six weeks to live. he recently turned 12. every christmas, his mom says, is a bonus, but it hasn't been easy. along the way liam has battled cancer and a bowel illness.

   >> if it was going to happen to anyone it was the best person to happen to. he's just gone with it.

   >> reporter: defying doctor's expectations every step of the way. liam , as you can tell, dreams of becoming a train conductor one day. for his family, each outing is a major undertaking but liam 's favorite is riding the rails near his home. just like the trains he loves so much, liam , remarkably, just keeps going. he's a special kid. i spoke to his mom kim and she said he's doing really well, even starring in his school's musical play last week. his family is now applying to a children's charity called starlight to fulfill his dream of riding in a big rig . starlight is one of kate middleton 's charities. you never know if some of the royal magic will meet little liam derbyshire.

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