1 in 7.4 billion... Meet the Milton Keynes boy who has the rarest condition in the entire world

Nine-year-old Finley Thygesen from Newport Pagnell is currently the only known person in the world to be born without a gene called SOX3.

His life-threatening condition means his pituitary gland produces no hormones or cortisol.

Without medication every few hours and growth hormones at night, his body would literally grind to a halt.

To add to the problem, Finley is a Haemophiliac with a blood clotting factor of 0 per cent - the worst end of severe.

“Everywhere we go we carry an emergency pack of medication for Finley. It’s a constant round of drugs and injections, yet he never complains,” said Mum Abigail .

She and her sister Emma have scoured the Internet to see if there are other people with the same missing gene.

“We don’t want to believe he is the only person in the world. There must be somebody else out there - and I would like more than anything to talk to them and their family,” said Abigail.

Tomorrow (Wednesday) is national Rare Diseases Day and Emma and Abigail are launching a huge campaign on social media called #AsRareAsFinley.

“We’d like people to share our posts all over the world. To find somebody would be amazing,” said Abigail.

Auntie Emma said: “Finley is the most loving kid you will ever meet. He doesn’t complain - he gets on with life with a big grin on his face. Being rare makes him special, but how special would it be to find someone like him.”