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Thurston father whose son diagnosed with Chitayat Syndrome takes on London Marathon to raise money for the Sick Children's Trust





A father whose son was diagnosed with an extremely rare condition is set to undertake a gruelling run for a charity which supported his family during the toughest of times.

Andy Cross, of Thurston, near Bury St Edmunds, will running in the London Marathon on April 23 to raise funds for the Sick Children’s Trust which gave him and his family a home away from home close to Addenbrooke’s Hospital in Cambridge where his baby son was battling for his life.

Andy’s son Rory was born in January 2022 with a rare genetic condition called Chitayat Syndrome – a condition that has been confirmed in only 13 people in the world, with only one other case in the UK.

Rory Cross was diagnosed with Chitayat Syndrome, a condition which causes breathing problems. Picture: Andy Cross
Rory Cross was diagnosed with Chitayat Syndrome, a condition which causes breathing problems. Picture: Andy Cross

The condition causes Rory to have breathing problems and he needs oxygen while he sleeps. He also uses a feeding tube which gives him fluid and his medication.

Rory spent the first few months of his life in West Suffolk Hospital and was later transferred to Addenbrooke’s Hospital after becoming seriously ill with a cold in March last year. It was during this time when the Sick Children’s Trust offered Andy and his wife Kirsty a room to live in at its Acorn House, just minutes away from the hospital.

The Sick Children's Trust offers rooms for families with sick children to live in close to the hospital. Picture: Andy Cross
The Sick Children's Trust offers rooms for families with sick children to live in close to the hospital. Picture: Andy Cross

Andy said: “It gave us one less thing to worry about. You don’t really think about too much when your child is that poorly.

“It was nice to be able to spend some time together because we’ve got two little boys and while Rory was in West Suffolk Hospital we were like passing ships. My wife would be with him in the day and I would then do the nights as I was holding down a full-time job.

Rory with his older brother Noah. Picture: Andy Cross
Rory with his older brother Noah. Picture: Andy Cross

“It was not a great time for us, but it saved us having to find a hotel or comute from our home.”

Andy describes himself as a casual runner and has had to contend with the great British weather on his training sessions, but he is slowly clocking up the miles.

The condition has been confirmed in only 13 people in the world. Picture: Andy Cross
The condition has been confirmed in only 13 people in the world. Picture: Andy Cross

“My training is going better than expected. I’m feeling comfortable. I hope I can run the marathon in four hours and 30 minutes,” he added.

To help Andy reach his charity target of £2,500, the Fox and Hounds in Thurston will be holding a family fun day on March 11 from 11am. There will be a live DJ, a raffle, auction, face painting and a charity cycle ride.

Andy hopes to raise £2,500 for the charity. Picture: Andy Cross
Andy hopes to raise £2,500 for the charity. Picture: Andy Cross

To donate to Andy’s fund-raising page: visit: https://rb.gy/hebwmw.