We were devastated with Bethan's diagnosis and couldn't believe she had such a rare illness...

When my daughter Bethan was just nine months old, she was diagnosed with a fracture of the femur (thigh bone). This was the first symptom of weakened bones that she had experienced, and it led to her diagnosis of Osteogenesis Imperfecta (OI) which is more widely known as brittle bone disease, OI is a bone disorder that weakens the bones causing them to break very easily. It is a rare condition that affects only 7 in 100,000 people worldwide. We were devastated with Bethan’s diagnosis and couldn’t believe that she had such a rare illness. Bethan is now 13 years old and she has grown up with OI. As a family we have become used to her condition, however recently she has been suffering from scoliosis, a complication of the condition which causes her a lot of pain. Scoliosis causes the spine to curve from side to side, forming an ‘S’ shape. To treat the condition we were told Bethan would need to have spinal surgery. Although the thought of her having such serious surgery was terrifying, I hoped that it would help to relieve the intense pain she had been suffering; I found it really difficult to see her in so much pain, knowing there was nothing I could do to help. Our local hospital, University Hospital of Wales was unable to give Bethan the treatment she needed. We were told that for her surgery we would need to go to Sheffield Children’s Hospital, a recognised centre of excellence for OI. Sheffield is 200 miles away from our home in Merthyr Tydfil, South Wales so in practical terms this wasn’t going to be easy for us. We had no plans for where we were going to stay or what would happen when we arrived. What we did know was that in Sheffield Bethan would receive the best possible care and for that we would have travelled anywhere. On the 17 September 2012 we arrived at Sheffield Children’s Hospital and Bethan was taken into surgery almost right away. While we were waiting for her to return to the ward we noticed some leaflets advertising Treetop House, accommodation provided by The Sick Children’s Trust. We asked a nurse about the ‘Home from Home’ accommodation and she contacted Ann the house manager, who couldn’t have been more helpful. She offered us a room in the house where we could stay for the entire time Bethan was in hospital. We were so pleased; the house was located on the top floor of the hospital so we would never be too far away from Bethan. It was really important for us to be with her and being offered a room so close to her ward was fantastic. It also alleviated any other stresses we may have had during this difficult time, as without the house we would have had the extra worry of travelling the long distance home every day and leaving Bethan, or the expense of staying in alternative accommodation in Sheffield. The house really was a ‘Home from Home.’ Even though it was within the hospital as soon as you walked through the doors you felt like you were in a different place. We were able to disconnect from the ward and have a proper rest. The facilities were just what we needed; we could have a shower, get a change of clean clothes and cook a home-made meal. It offered the perfect distraction even if this was just putting a load of washing on or washing the dishes after dinner. We usually took it in turns to go back to the house and rest so Bethan was never alone. But if we did both go back to the house, Bethan was comforted by knowing we were only going upstairs, which was great. We were also able to relax knowing that if there was any change in her condition we would be notified as soon as possible, as the nurses could call through to the phone in our room. Something I will never forget about our time in Treetop House is the emotional support we received from the other families and the staff. We were going through such a difficult and worrying time and talking to other families who were going through similar experiences to us was really helpful. We were able to support each other and help each other through the different emotions we felt every day. The house staff really helped to create a homely atmosphere; they always had a smile waiting for you and after a hard day on the ward this was really welcome. My older daughter Lauren, who was 17 at the time, was also able to come and stay in the house, which was lovely as we missed her so much and she really helped to lift Bethan’s spirits. Had Lauren not been able to stay, it was unlikely she would have been able to visit at all as the hospital was so far away from home. Bethan was in Sheffield Children’s Hospital for ten days in total and without The Sick Children’s Trust I am unsure how we would have coped. The accommodation the charity provides enabled our family to stay together by Bethan’s bedside and enabled us to wake up to each new day stronger and more hopeful than the day before. Since coming home Bethan has experienced a lot of problems. We have been told that it is likely she will need further surgery to treat her condition and now we are just waiting for an appointment with the surgeon. Our journey is very much continuing and it is likely Bethan will have to go back into Sheffield Children’s Hospital. It is scary not knowing what is going to happen but charities like The Sick Children’s Trust make us that little bit less apprehensive, as we know they will be there to help us when we need them. Ceri Morgan, Bethan’s Mum