Baby born with cloudy eyes is one of just 23 in world...

The mum and dad of a baby with a genetic disease so rare it has no name have vowed to keep fighting for him after the devastating diagnosis. Four-week-old Tommy Parry is one of only 23 in the world ever to be born with the mitochondrial gene, which impairs his energy and means his brain is undeveloped. His family are now desperately searching for a second opinion after doctors said there was no more they could do to save their baby.

Image Credit: Metro [Tom Parry with little Tommy at the hospital.. A baby is one of just 23 in the world diagnosed with a rare genetic disease - after doctors spotted his eyes were cloudy at birth. Little Tommy Parry, four weeks old, had a bit of trouble breathing when he was born and doctors noticed his eyes were cloudy. They initially thought he had cataracts but, when a scan revealed his heart muscle was bigger than it should be, he was referred to Great Ormond Street Hospital at two weeks old. There he and parents Chantelle Doran, 30, and Tom Parry, 33, had genetic testing and on February 6, 2025, they were told he had a rare mitochondrial gene - so rare it has no name. It means his body isn't producing the energy to make the heart pump and for the brain to work.]

Tommy’s mother Chantelle Doran said: ‘He’s been fighting from the start. ‘We were told it’s just bad luck. We’re still hoping on hope. ‘They said there is no name for it at the moment as it’s so rare.’. Doctors first noticed something was wrong with Tommy within days of his birth on January 8. The baby boy was having trouble breathing and his eyes were ‘really cloudy’. Scans of the then two-week-old’s heart revealed his heart muscle was bigger than it should be and he was referred to specialists at Great Ormond Street Hospital.

Image Credit: Metro [Chantelle Doran with baby Tommy. A baby is one of just 23 in the world diagnosed with a rare genetic disease - after doctors spotted his eyes were cloudy at birth. Little Tommy Parry, four weeks old, had a bit of trouble breathing when he was born and doctors noticed his eyes were cloudy. They initially thought he had cataracts but, when a scan revealed his heart muscle was bigger than it should be, he was referred to Great Ormond Street Hospital at two weeks old. There he and parents Chantelle Doran, 30, and Tom Parry, 33, had genetic testing and on February 6, 2025, they were told he had a rare mitochondrial gene - so rare it has no name. It means his body isn't producing the energy to make the heart pump and for the brain to work.]

Tommy’s parents Chantelle, 30, and Tom, 33, were told then their child would not survive two days, but he proved doctors wrong. However after genetic testing, medics discovered Tommy was suffering from a rare genetic disease. He has a rare gene which means his body is not producing the energy to make the heart pump and for the brain to work. Chantelle said: ‘There have been 22 children in the world with it. Not one of them has survived longer than two months.

Image Credit: Metro [Four-week-old baby Tommy Parry who doctors say was born with a rare mitochondrial gene. A baby is one of just 23 in the world diagnosed with a rare genetic disease - after doctors spotted his eyes were cloudy at birth. Little Tommy Parry, four weeks old, had a bit of trouble breathing when he was born and doctors noticed his eyes were cloudy. They initially thought he had cataracts but, when a scan revealed his heart muscle was bigger than it should be, he was referred to Great Ormond Street Hospital at two weeks old. There he and parents Chantelle Doran, 30, and Tom Parry, 33, had genetic testing and on February 6, 2025, they were told he had a rare mitochondrial gene - so rare it has no name. It means his body isn't producing the energy to make the heart pump and for the brain to work.]

‘They said he wasn’t going to make it much longer.’. Tommy’s parents have been advised to turn off their ventilator, but they argue doctors are not ‘giving him a chance’ to survive. The mum-of-three said: ‘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.’. The devastated family are appealing for a second opinion which might lead them to treatment that would help their son survive the prognosis.

They also want to raise awareness for an earlier diagnosis or research to help future children and families. According to Genetic Alliance UK, a rare condition is one that affects fewer than 1 in 2,000 people. There are currently around 7,000 rare conditions, although scientists are regularly discovering new ones. Seven in 10 rare conditions affect children, and more than three out of 10 children with a rare condition die before their fifth birthday.

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