Published Tuesday, 21 August 2012
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Ben Johnston, from Waringstown, spent the first 17 months of his life in intensive care because doctors didn't know what was wrong with him.
When he was six months old, medical staff at Great Ormond Street Hospital in London told his parents he would not survived. Now two and a half, the toddler is starting to crawl.
Ben has a healthy twin brother - Leo. He was diagnosed with a rare condition, called Pons Hypoplasia, last May by doctors at the Royal Belfast Hospital for Sick Children.
The condition means that the part of Ben's brain which governs breathing and swallowing is smaller than expected.
Ben's mother, Ciara, told UTV that when the twins were born Leo cried, but Ben did not and was immediately whisked away to intensive care.
"Initially, they weren't able to tell us anything."
The babies were conceived with the aid of fertility treatment and dad Andy said it was "very difficult" to bring home their healthy boy while leaving the other in intensive care in Belfast.
He has given up his job to be a full time carer to his son - as Ben needs 24 round the clock care.
They can't see any reason why Ben won't continue to develop, all be it very slowly. He won't meet his milestones the way Leo has; he will meet them in his own time. So the future is good.
The toddler remains on a life support machine to assist his breathing, He feeds through a tube in his stomach and needs physiotherapy twice a day and a nebuliser four times a day.
He cannot be left alone for a second.
His devoted mum explained: "If he was to disconnect his tube and no one was with him, the consequences would likely be fatal."
Ciara says that, with the help of day and night carers, the family try to have as normal a life as they can.
"The future is different for Ben - but it is positive."
Consultant Paediatrician Dara O'Donoghue said: "As he grows his brainstem should grow. We don't know exactly how far that will develop but we are hopeful that it will progress and potentially he may be able to take over a lot of the work of breathing by himself over the coming years."
The Johnston family have now set up a charity, called Ben's Fund, aimed at helping children throughout Northern Ireland who rely on a life support machine for survival.