So how did we get here? Rio was born with Hypoplastic left heart syndrome (HLHS) – a rare heart defect where the left side of the is severely underdeveloped which causes many complications. Over the last five years, Rio had been in and out of hospital undergoing the all three high-risk stages to prevent a heart transplant. At just a few days old he underwent the Norwood procedure – extremely complicated, but Rio pulled through. Not long after he underwent open heart surgery for the Glenn procedure and once again recovered well.
In fact, he recovered really well – for the next couple of years he was fine, we had regular visits to Leeds General Infirmary. 

Rio was growing at the usual rate and hitting all his milestones – he was thriving. Then about 3 years ago, he started to deteriorate and that’s when the doctors said we’d need the third stage – the Fontan. He did OK but after two weeks at home, needed to go back to hospital in October.

We were in and out of hospital from October to January at Leeds General Infirmary and that’s how we found out about The Sick Children’s Trust. We were offered a room in Eckersley House which was great as at that time, Rio had a four month old brother – Jai and it meant I could still be there for Rio, while looking after Jai. It made things easier.
In January 2015, we were transferred to the Evelina in London – things were not looking good. Rio’s condition wasn’t improving – he had a lot of fluid on his lungs. The hospital dealt with his fluid, but it wasn’t a permanent fixture. So in August we were referred to Freeman Hospital for a transplant assessment.
And seven months later we were still waiting for a heart for our little boy. This was the last option for Rio. He was surviving on a Glenn circuit which was pumping his blood for him, but this wouldn’t last forever.
While we waited, we were fortunate enough to live at Scott House. Jai came and stayed when he could – when Rio was well. It made a world of difference for us all to be there. Jai played a huge part in Rio’s everyday life. He brought some normality for us all – not just Rio. But when Rio saw  Jai, there was genuinely a huge difference in his well-being. He was so much happier. In 2016 Rio received the greatest gift of all, a second chance, a chance to make more memories with his family, he received his heart transplant.  The surgery went well, he recovered but as a complication his kidneys began to fail and he required dialysis. We were transferred back to Leeds to be nearer to home and he was seen by kidney specialists who said he would need a kidney transplant but he wasn’t a suitable candidate. Sadly in June 2017 we tragically lost Rio. 

The Sick Children’s Trust’s ‘Homes from Home’ have meant we could all stay together as a family, carry on some normality and most importantly be there for Rio. It took the pressure off us a lot and rather than travelling back to Chesterfield every night we could be there all day every day. Scott House and Eckersley House offered us comfort and support when we needed it the most. 

Please help me to raise awareness of The Sick Childrens Trust. Each room is £30 a night it will help provide home from home accommodation for other families who face similar situations as we were in.