When Chantelle Doran held her newborn son, she noticed his eyes first. They looked cloudy, almost milky. Doctors initially suspected cataracts. However, Tommy’s breathing troubles quickly signaled something far more serious.

Tommy Parry was born on January 8 at Watford General Hospital after a smooth pregnancy. Within weeks, specialists saw his heart struggle to pump and found fluid building around it. Then Great Ormond Street Hospital delivered the crushing answer. Tommy carried an ultra-rare mitochondrial gene that stops the body from making enough energy for vital organs. The condition is so uncommon it still has no formal name.

Doctors told the family that every known baby with the same genetic change had died before two months old. They warned Tommy might have only days. They also advised his parents to consider switching off the ventilator.

Yet Chantelle and Tommy’s father, Tom Parry, cannot ignore what they see. Tommy opens his eyes. He moves his legs. He fights for breath, even if machines now help him. So they push forward.

First, they ask for a second opinion. Next, they search for any possible treatment, no matter how experimental or hard to find. At the same time, they want others to learn from Tommy’s case. Earlier recognition could speed research. It could also help future families face fewer unknowns.

For now, their focus stays simple. They love their son. And they refuse to give up hope.