We arrived at the Royal London Children’s Hospital on 30th May 2011 with nowhere to stay.

We arrived at the Royal London Children’s Hospital on 30th May 2011 with nowhere to stay. Our son Freddie had been born on 29th May 2011 following his premature birth at 26 weeks at our local hospital in Huntingdon, Cambridgeshire. Freddie needed specialist care and that couldn’t be provided in Huntingdon so we’d just followed him to London without thinking that far ahead. One of the nurses on Neonatal Intensive Care Unit (NICU) gave us the details of a charity The Sick Children’s Trust and its Stevenson House which became our home for 19 days from the 31 May until 18 June 2011. Stevenson House was no more than a five minute walk from NICU, which meant that we could be close to Freddie at all times. We were so worried about him as due to his early arrival in this world he had to fight for life and had a number of health issues to overcome. Freddie was ventilated for long periods and it was extremely difficult as he was so ill. We could not financially afford to stay at a hotel for an unknown period of time. Commuting would have meant time away from Freddie which was not an option at this critical time. As much as we didn’t want to leave Freddie, we knew that in the long run we needed to recharge our batteries and recuperate ready to spend another very long and emotionally draining day by Freddie’s side, and Stevenson House provided us with this space. Freddie is our first child, so luckily we did not have to worry about other children and thanks to Stevenson House we could focus all our time and energy on him. Also, because the house was so close to the hospital it allowed us to be close to Freddie and spend as much time as possible with him. The doctors often advised us to take a break as at times we were spending too much time on the unit and were exhausted. Staying only five minutes away at Stevenson House meant this was easier and we didn’t feel like we were leaving Freddie. Having that space away from the wards meant so much to us, firstly because we it meant that my wife Carys could take time to express her breast milk in private and recover from a difficult and traumatic birth. As much as we did not want to eat anything, it was important to keep our strength up for Freddie. The kitchen at Stevenson House meant that we could pop back and make a quick bite to eat before rushing back to Freddie, without having to spend the time sitting in a restaurant. In addition, Carys had to eat well to enable enough healthy milk to be expressed to feed Freddie and get him strong enough to fight. Secondly we also found that being away from the wards at times was helpful as we had other families in the house that we could share experiences with and support each other. On other occasions it was important to be able to spend time by ourselves in the privacy of our own room, something that was respected by other families. We left Stevenson House on the 18th June when space became available for Freddie at Addenbrooke’s Hospital in Cambridgeshire, which was much closer to home. Freddie was transferred here and we were then able to stay at home and just come in to visit him daily. Freddie was in hospital for 14 weeks during which time he stayed at three different hospitals. When initially discharged, Freddie stopped breathing after five days and spent 16 nights in hospital being monitored before being discharged with home oxygen. He required this 24 hours a day. It has been a rollercoaster ride but Freddie is finally strong enough to not need any oxygen. We celebrated his first birthday last week and he is a happy little boy. He currently is seen by his Consultant once a month, but she is pleased with his progress. Freddie still has chronic lung disease but thanks to the oxygen his lungs are much stronger now and whilst we never know what the future holds, we are very positive that Freddie will continue to grow into a healthy boy. Without the kindness and support of those at The Sick Children’s Trust in the early days we do not know how we would have coped. We will always be indebted to the charity for allowing us to be there with Freddie as much as possible to support him in his fight for life and I can’t put into words how much that meant to me and my family. Andy, Freddie’s Dad.

Ellie's journey

Our daughter Ellie was diagnosed with heptoblastoma, a form of liver cancer, when she was just 12 weeks old at St James Hospital in May 2005. She was transferred to Sheffield Children’s Hospital where she began four months of intensive chemotherapy. During this time we were lucky enough to stay at The Sick Childrens Trust’s ‘Home from Home’ in Sheffield, Treetop House. This was a huge relief as it meant that during her treatment I was able to be at the hospital 24/7 but also meant I had somewhere to come back to after a long day on the ward and have meals and a good nights sleep. Also, when Ellie was taking a break from the chemotherapy treatment she was able to come to the house and be surrounded by a normal environment with comfy sofas and beds, a play room, other families – something that resembled a real homely place which was as a new mum, something I missed immensely – spending time with my baby in a ‘normal’ environment. At seven months old Ellie was transferred back to Leeds to be given a liver transplant at St James’ Hospital in Leeds where once again The Sick Children’s Trust supported my family with a room at its Leeds ‘Home from Home’, Eckersley House. This was so helpful for us as a family as our home is in Rotherham and quite some way away from the hospital. There we spent another three months. I can’t imagine the financial implications we would have faced with the charity’s support. Seven months is such a long time to be away from home but staying with The Sick Child took a lot of the weight off our shoulders financially and emotionally. The most important thing to myself and my husband Antony during this experience was Ellie’s wellbeing and the charity gave us the gift of being able to spend time with her which was all we needed. Once Ellie was allowed off the ward we were moved into The Sick Children’s Trust’s flat so we could learn how to take care of her before eventually moving home. This was wonderful as we had the reassurance of the hospital if we needed it knowing it was right by Eckersley House but also the security the flat gave us. During the seven months we spent away from home we were so grateful to The Sick Children’s Trust to providing us with accommodation in their ‘Homes from Home’ as this let us be together as a family at a very distressing time and without it, it would have been an extremely hard situation to be in. It is now seven years later and Ellie is doing much better, looking at her you wouldn’t believe this little girl went through so much at the start of her life. I will be forever grateful for The Sick Children’s Trust for their support, without these houses families wouldn’t be able to stay together and would have to travel long distances at such hard times. Tracy Greenwood, Ellie’s mum