A four-week old baby is one of just 23 to have been diagnosed with a deadly genetic disease so rare that it has no name.
Tommy Parry, born on 8 January at Watford General Hospital, has an ultra-rare mitochondrial gene which means his body is not producing enough energy to make his heart pump or his brain work.
All 22 babies diagnosed with the same gene have passed away before reaching two-months-old, and doctors previously warned that the baby would not live for longer than two more days.
The disease was discovered after he had difficulty breathing and doctors spotted his eyes were cloudy at birth.
He was originally thought to have cataracts but Tommy was diagnosed with the mitochondrial gene at Great Ormond Street Hospital at two-weeks-old.
His brain is also undeveloped.
Mother Chantelle Doran, 30, from Hemel Hempstead, Hertfordshire, and father Tom Parry, 33, were told there is nothing that can be done to save their child and they should turn off his ventilator.
But the family is hoping to get a second opinion and to find treatment.
Ms Doran, who works at a nursery, said: ‘He’s not been given a chance.
‘He was on oxygen for two weeks. He did one day with nothing. Now he’s on a ventilator they say that’s what is keeping him alive. But at one point he could breathe on his own.
‘There have been 22 children in the world with it. Not one of them has survived longer than two months. They said he wasn’t going to make it much longer.
‘We’re still hoping on hope,’ she added.
‘We were told it’s just bad luck. They said there is no name for it at the moment as it’s so rare.
‘His body isn’t producing the energy to make the heart pump and for the brain to work.
‘But he opens his eyes, he moves his legs. I’m struggling to understand it when his eyes are wide open. He’s been fighting from the start.
Tommy weighed 6lbs 1oz at birth after a smooth pregnancy.
‘When he was born he was having some trouble breathing,’ his mother said.
‘They helped him out. They noticed his eyes and that they were really cloudy.’
Tommy was taken to the neonatal intensive care unit, where doctors found that his heart muscle was bigger than it should be.
Ms Doran said: ‘His heart wasn’t pumping as well as it should be.
‘He had a bit of fluid around the heart. They said it could get better on its own.’
But when his breathing problems got worse they re-ran the scans and saw there was more fluid around his heart.
He was then referred to Great Ormond Street Hospital.
Chantelle said: ‘They took us to a room and said he is very very ill.
‘They said he’s not going to make it past the next two days.’
As well as finding treatment for Tommy, the family hope to raise awareness for an earlier diagnosis or research to help other children impacted by the disease and their families.