The parents of a baby boy who was only given four hours to live are raising money for The Sick Children’s Trust which gave them a free ‘Home from Home’ minutes from their son’s hospital bedside.
Ash Jones, 29, and wife Victoria, 24, from Halstead were given the devastating news at their 24 week scan that their baby would be unlikely to survive more than four hours after birth. During their pregnancy, a scan at 12 weeks revealed that their son George would be born with his bowel, liver and stomach on the outside of his body. Following this, at their 24 week scan doctors discovered he had a shortened right arm with a missing bone and that same week an echo scan revealed George had a rare heart condition – tetralogy of Fallot – where four heart defects occur at once, which was when the couple were given the heart-breaking news.
Due to the complexity of his condition, George was born at The Rosie Hospital, Cambridge, over an hour away from home to give him the best chance of survival. At just hours old, George’s parents were told to prepare for the worst and to consider all treatment options as he struggled to survive. But despite the odds, George defied doctors’ expectations and is now 18 weeks old and fighting his way out of hospital. During the first five weeks of his treatment at The Rosie Hospital, Ash and Victoria were supported by The Sick Children’s Trust which runs free ‘Home from Home’ accommodation, so they could be close to their seriously ill baby. Dad Ash says:
“There’s no way you can prepare yourself for the news that you may only get to spend four hours with your baby.
“When he was born, it was clear just how ill George was and we really thought we could lose him. At this time – when we weren’t sure whether he’d survive – the last thing I wanted to do was leave his side. Victoria was also in hospital and I wanted to be there for my family. But realistically I knew I had no choice, so the following evening as I was preparing to leave I was overwhelmed when I was given keys to Chestnut House, run by The Sick Children’s Trust. Thanks to this ‘Home from Home’ I was able to be close to the two people that needed me the most. Once Victoria was discharged she came to stay too, and from that moment we lived there, just minutes from our son’s bedside until he became strong enough for us to make that trip from home to the hospital every day to be with him.”
Since their first stay, Ash and Victoria have stayed in Chestnut House along with the charity’s other ‘Home from Home’ in Cambridge, Acorn House. The ‘Homes from Home’ give families free accommodation which includes their own private room, access to communal living areas, a kitchen and laundry facilities. Ash continues:
“We can’t thank The Sick Children’s Trust enough for keeping us by our son’s side when he really needed us. And since then, they have supported us when he’s needed further treatment in Cambridge which has relieved us of so much stress. To say thank you, I have organised a 66 mile walk in the Isle of Wight to raise money so more parents can remain by their seriously ill child’s side. For every week George spends in hospital, I want to raise £1,000 to help the charity continue its fantastic work.”
The Sick Children’s Trust runs ten ‘Homes from Home’ across the country supporting families with seriously ill children. And although the accommodation is provided for free, it costs the charity £30 to support a family for one night. Chestnut House Manager, Abi Abdel-aal, says:
“George is such a little fighter and has come such a long way since the summer – we really hope he makes it home soon.
“We’d like to say a huge thank you to Ash and Victoria for their passionate fundraising challenge – as a charity we completely rely on voluntary donations to support families is the worst imaginable situations, so whatever Ash raises will make a huge difference to many.”
To find out more about Ash’s Isle of Wight Challenge on 29 April 2017, please visit: https://www.justgiving.com/fundraising/ash-jones87
For further information about The Sick Children’s Trust, please visit http://www.sickchildrenstrust.org/