A dad from Bury St Edmunds is thanking The Sick Children’s Trust for its support after his son was born with an extremely rare condition.
Andy Cross’ son, Rory, was diagnosed with Chitayat Syndrome, a genetic condition which causes severe breathing difficulties, when he was seven weeks old. Rory is only the second person in the UK and thirteenth in the world to be diagnosed with the condition.
Due to complications when he was born in January 2022, Rory was immediately taken to the neonatal intensive care unit (NICU) at West Suffolk Hospital where he was also suffering breathing difficulties. With his condition deteriorating he was transferred to Addenbrooke’s Hospital in Cambridge for specialist care.
Rory was ventilated before spending the following five weeks receiving breathing assistance from a low flow oxygen machine. He was then discharged with breathing equipment so Andy and his wife Kirsty could continue his treatment at home. Throughout Rory’s time in Cambridge, Andy and Kirsty were supported with a free place to stay at Acorn House, a ‘Home from Home’ run by The Sick Children’s Trust which provides families with a place to stay on the hospital site close to their seriously ill child’s hospital bedside. To thank charity for its support, Andy will be lacing up his running shoes and taking on the London Marathon on 23 April to raise vital funds. Andy said:
“Rory spent over 100 days in hospital last year on oxygen machines and undergoing medical procedures to assist with his breathing problems. Looking back, it’s difficult to comprehend how hard it was to see our newborn son that poorly.
“After spending hours on the ward anxiously waiting for an update on Rory’s condition, we were absolutely exhausted. Being told we had a place to stay at Acorn House close to Rory, was such a relief. We live 45 minutes away from Addenbrooke’s Hospital, we couldn’t image being that far away from our baby boy. The Sick Children’s Trust made sure we could be together during the hardest time of our lives.
“Rory has come such a long way in a year, he is getting stronger and surprises us every day. Unfortunately, as Chitayat Syndrome is so rare the future is unclear as to how it will affect Rory 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.
“I wanted to give something back to thank The Sick Children’s Trust for supporting us in our darkest hour. Taking part in the London Marathon is a once in a lifetime opportunity and I feel so honoured to be doing it for a charity that is so close to our hearts.”
Andy joins the other 11 runners who will be running the London Marathon to support The Sick Children’s Trust’s and its ten ‘Homes from Home’, which support families from across the country while their children are seriously ill in hospital. Community 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. While Rory still faces some challenges it is wonderful to hear how well he has been getting on at home.
“We do not charge families to stay in any of our ‘Homes from Home’, however it does cost the charity £40 a night to support a family, and that is only rising with the cost-of-living crisis. As a charity we rely on the generosity of our supporters and fundraisers, like Andy, to make sure we can continue supporting families while their children are seriously ill in hospital. We cannot thank him enough for taking on this challenge to support us.”
More information about Andy’s fundraising can be found on her Just Giving page https://www.justgiving.com/fundraising/rorysrarestory