Nicholas Coke was never supposed to reach his first birthday.
He was born with a birth defect known as anencephaly whereby children are missing part, or most of their brains.
"He doesn't have a brain -- he just has the brain stem," explains his mother Sheena. "He can't see, he can't hear, he can't suck ... He doesn't crawl, he doesn't sit up."
Most children born with anencephaly are also missing the tops of their skulls and die within hours of birth. Nicholas' survival has amazed doctors and is why his mum calls him a 'miracle baby'.
Baby Nicholas' brain stem controls the basic functions of breathing and certain reflexes, without a 'higher' brain he is not capable of thinking or emotion.
However, Sheena Cole says her son has been able to respond to her. "He's smiling," she said "We even got him to laugh for the first time and that was wonderful."
Although there is no single cause of birth defects such as anencephaly, taking folic acid during pregnancy can reduce the chances of neural tube defects by 50-70%.
Nicholas' family are grateful of every day they have with the little boy as they know that he cannot realistically defy the odds for much longer.
"It's hard to know that I'm going to be burying my son soon," says Sheena, "but it's wonderful to know he's made it a year."
It should be a tragic story, but the evident joy Nicholas has brought his family in his short life is inspiring, and they are truly thankful for every day they have together.