A Bury St Edmunds dad whose son is only the second person in the UK and the thirteenth in the world to be diagnosed with an extremely rare condition has opened up about the "hardest time of their lives".

Andy Cross' son Rory was diagnosed with Chitayat Syndrome, a genetic condition which causes severe breathing difficulties, when he was seven weeks old.

East Anglian Daily Times: Rory was diagnosed with Chitayat Syndrome at just seven weeks old.Rory was diagnosed with Chitayat Syndrome at just seven weeks old. (Image: The Sick Children's Trust)

Born at West Suffolk Hospital in January 2022, Rory was ventilated before spending the following five weeks receiving breathing assistance from a low flow oxygen machine at Addenbrooke's Hospital.

He has now been discharged with breathing equipment so that Mr Cross and his wife, Kirsty, can continue his treatment at home.

East Anglian Daily Times: Rory spent 100 days on ventilators at Addenbrooke's Hospital.Rory spent 100 days on ventilators at Addenbrooke's Hospital. (Image: The Sick Children's Trust)

"Rory spent over 100 days in hospital last year on oxygen machines and undergoing medical procedures," Mr Cross said.

"Looking back, it's difficult to comprehend how hard it was to see our newborn son that poorly."

He added: "Rory has come such a long way in a year, he is getting stronger and surprises us every day.

East Anglian Daily Times: Rory's mum and dad stayed at Acorn House, which is run by The Sick Children's Trust.Rory's mum and dad stayed at Acorn House, which is run by The Sick Children's Trust. (Image: The Sick Children's Trust)

"Unfortunately, as Chitayat Syndrome is so rare, the future is unclear as to how it will affect him growing up.

"We are hoping, in time, his breathing will continue to improve and one day he won't require his oxygen machine at home."

While Rory was being treated in Cambridge, his mum and dad were supported by The Sick Children's Trust with a free place to stay nearby.

East Anglian Daily Times: Rory has now been discharged with an oxygen machine to use at home.Rory has now been discharged with an oxygen machine to use at home. (Image: The Sick Children's Trust)

Mr Cross is now running the London Marathon on Sunday April, 23, to thank the charity for its support during the "hardest time of [their] lives".

The Sick Children's Trust's fundraising manager Elisa Coppello-Dowd said: "We're so pleased we could support Andy and Kirsty so they could always be close to Rory's side during this incredibly difficult time."