Stevenson House has become a second home to my family over the last ten years. Since July 2003, we have stayed in the ‘Home from Home’ provided by The Sick Children’s Trust multiple times. My son Scott was diagnosed with Crohn’s Disease at only six years old and since then has had to make frequent visits to The Royal London Hospital for various tests and treatments. If we had not been able to stay at Stevenson House, we would have had to travel over two hours home every time we visited the hospital. At times when Scott was admitted this would have been so difficult, since I could never imagine leaving him alone when he was poorly in hospital.
Scott had been unwell on and off for about a year before he was taken into The Royal London Hospital for the first time. He had been suffering from severe tummy pains, sickness, diarrhoea and spiking temperatures, the classic symptoms of a virus or even the flu. We kept taking him to the doctors and were always sent away, unsurprisingly with the diagnosis of a virus that would pass after a few days. However although the viruses did pass, they would always reoccur later on. We also noticed that Scott was also really run down most of the time and was always tired. When a newly qualified GP started at our local surgery, we thought we would take Scott to see her to get a new opinion. She suspected that Scott may have a condition relating to his appendix and that we should take him to the children’s ward at Worthing Hospital to have tests.
Taking your child to hospital is never ever going to be an easy thing to do; you are always going to be worried what the outcome is going to be and about the severity of the results. But I think as we had waited so long for Scott’s illness to be taken seriously, we were relieved to be getting somewhere and hopeful that this would lead to Scott receiving treatment that would help him to get better. Scott’s blood tests did not reveal the results the doctors expected, and as he was too small to have a colonoscopy to find out more, we were told that he would have to go to The Royal London Hospital for more tests. So the following day in July 2003 my husband, Jamie our youngest son who was only eight months old at the time) and I all travelled with Scott as he was taken by ambulance to London.
When we arrived at the hospital and Scott was admitted, we could think of nothing else but his condition and what would be revealed from all the tests they were doing. We didn’t even have a chance to worry about the practicalities of where we were going to stay because the nurses on the ward took care of this by contacting Ewelina, house manager of Stevenson House at the time. Ewelina offered us a room in the ‘Home from Home’ accommodation provided by The Sick Children’s Trust and told us we could stay as long as we needed. It was brilliant because it was less than a five minute walk away from Scott’s ward.
Ewelina led us from the ward to the house and welcomed us in. I remember feeling such relief knowing we could stay in the house free of charge, be close to Scott and have Jamie with us too. I was still breast feeding Jamie when Scott was first admitted into The Royal London Hospital so it was really important that he could stay with us. I really didn’t want to have to leave Scott’s side when he was so ill and frightened but I also didn’t want to leave Jamie to stay with anyone else. Stevenson House enabled us to stay together as a family which is more than we could have ever asked for.
The official opening of the house, the seventh ‘Home from Home’ provided by The Sick Children’s Trust, coincided with our stay. Before this, there was no ‘Home from Home’ by The Royal London Hospital, which we found difficult to believe, as for us it was invaluable. Minnie Driver came to open the house officially and she was great with our son Jamie. He even sat on her lap and was pulling her hair – which is definitely a tale that we won’t let him forget.
On the same day that marked a remarkable milestone for the charity, we were told that Scott had a life changing condition that would affect him for the rest of his life, so to say that the day was filled with mixed emotions would be an understatement. Scott was diagnosed with Crohn’s disease which is a very rare condition in young people. It is an inflammatory bowel disease which can cause many side effects. The main side effects were those that Scott had been experiencing for the past year along with a narrowing of the bowel itself, infections and blockages.
Scott was in hospital initially for two weeks and words cannot describe how helpful it was to have Stevenson House. Without it, we would have had to pay for alternative accommodation as there was no way we were going to travel all the way home to Worthing when our little boy was staying on a hospital ward in London. The house facilities were amazing and just what we needed. We spent the majority of our time with Scott on the ward but it was lovely to know that we had the house to go back to. It was a great space to gather our thoughts, relax and get some rest. There was also a play room in the house which was great for Jamie. He was able to play happily with all the toys and also with the other children staying in the house; they were all particularly fond of taking over the whole house to play hide and seek. Having other families in the house was actually really helpful for us too, we were all in similar situations and it was good to be able to talk to people who knew what you were going through.
Our room in the house had a direct phone line to Scott’s ward which helped to relax us while we were in the house. We knew that if there was any problem or emergency with Scott, the nurses could get hold of us right away and we could be with him in under five minutes. I remember getting a call one night from Scott’s nurse as he had woken up in the middle of the night very upset and distressed. I went straight over to Scott to comfort him and stay with him until he fell back to sleep. If I had been at home or staying in alternative accommodation, this wouldn’t have been possible.
Scott was also able to come over to the house to have some away time from the ward. We gave him baths and he had a chance to lounge on the sofa, watch a DVD and play with his little brother. This gave him a sense of normality and really helped him to get through his time in hospital. It helped to keep his spirits up and also helped him to come to terms with the treatments he was going through.
Scott is now much older, but his condition is incurable. We have been returning visitors to Stevenson House for the last decade and we will continue to be while Scott undergoes treatments. Our local hospital is unable to deal with Scott’s condition as they don’t have a children’s gastro specialist, unlike The Royal London Hospital.
Scott now stays in Stevenson House with us when we go to London for his treatments and this really eases his mind about the trip as he knows the house and the staff. Jamie and my other son Alex (who is now seven years old) are also able to stay with us each time. Joan who is the current house manager of Stevenson House has been incredible to us over the years, and her support can never be overestimated. From her practical help in the house to her emotional support over a cup of tea, she has been amazing. Without The Sick Children’s Trust I really don’t know how we would have managed and we will always be thankful to them.
Lisa Baker, Scott’s Mum
