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