Our 'Home from Home' in London

Our daughter, Alliza-Lily, was just six days old when on 22 November 2011 she was rushed to a local hospital after she had refused a feed, become lifeless with shallow breathing and had turned blue round the mouth. During her six days in the special care baby unit she was diagnosed with congenital hyperinsulinism, which is a rare condition and is caused by excessive insulin secretion. Alliza-Lily was then transferred from the hospital near our home in Corby, Northants, to Great Ormond Street Children’s Hospital (GOSH) in London for further investigations. GOSH's Endocrine Department is the national centre for dealing with this condition. She was discharged about three weeks later on 23 December. After finding out about congenital hyperinsulinism, and after speaking to the Endocrine team at GOSH, we realised how lucky we were that the paramedic, Ian Pratt who attended Alliza-Lily had saved her life by conducting a simple blood sugar test. Through this test, it was found Alliza-Lily was producing excessive amounts of insulin with her blood sugar level reading dangerously low. A shot of glucogen was given and Alliza-Lily’s condition began to stabilise for her journey to our local hospital. In January we were given the opportunity to meet up with Ian Pratt and the ambulance crew who attended her to thank them. We heard about The Sick Children’s Trust’s ‘Home from Home’ accommodation through another parent at GOSH - the hospital had been unable to assist myself and my partner with accommodation. The Sick Children's Trust really helped us by offering us a permanent base at its Guilford Street House during Alliza-Lily’s stay at GOSH. It meant that David and I were able to stay together and be near the hospital, which was only a few minutes’ walk away. It gave us peace of mind knowing we could rest when we needed to and get a decent night’s sleep - just being able to take a shower and wash our clothes benefited us immensely. I think it also helped us to bond with our new-born baby. If we had to travel back home every day to Corby, which is over 200 miles in a round trip, it would have been much more difficult as we would not have been so aware of any little milestones she had made. It was also great to know the ward could call us day or night in our room at Guilford Street House. They didn’t need to ring us, thankfully, but we called them to check in after we had left the ward at night. To have our own private space away from the ward helped us to maintain our sanity at this difficult time and to think about things clearly. The House Manager Tina was fantastic. She was so helpful and a great listener and nothing was too much trouble for her. An absolute diamond! We went straight to the hospital after we woke up and were there till late at night, so we did not really get the opportunity to meet many other families staying at Guilford Street House or make full use of all the facilities. We only knew one family whose daughter happened to be on the same ward. Alliza-Lily still has the condition and is doing well and responding to her medication. We had a follow-up appointment at GOSH at the end of February, which went well, and we have another in June. She will need an MRI scan at some point to ensure her brain is functioning properly and more follow-up appointments at our local hospital. Michelle Walkley, Alliza-Lily’s mum

Our twins fight for their life

For months my wife and I had eagerly awaited the arrival of our twin boys, but little did we know they would be born eight weeks early at a local hospital in Carlisle, where they would then be kept in special care for seven weeks. Joshua was born weighing 3lb and Ashton 4.9lb. From the beginning Joshua was the weaker of the two. He struggled to put on weight and had a lot of trouble feeding. He was soon admitted to The Freeman Hospital in Newcastle upon Tyne due to a large Ventricular Septal Defect (VSD) in his heart. Usually parents would stay at the Freeman, but as we had Joshua’s twin Ashton with us, plus the possibility of visits from their five-year-old brother, Harvey, it was arranged for us to stay a short distance away at Crawford House at The Royal Victoria Infirmary in Newcastle upon Tyne, provided by The Sick Children’s Trust. Thankfully we were put in touch with this charity, which provides free accommodation to families with sick children so they can stay nearby the hospital while their child is being treated. Crawford House was our ‘Home from Home,’ it fitted our needs perfectly. During our stay, Joshua began to get worse. He was sick after every feed which caused him to choke and temporarily stop breathing. This was very distressing for us as we needed him to get to 3kg in order to have his heart surgery. We are a very close family and the thought of being away from Harvey while Joshua was being treated broke our hearts. We live in Bassenthwaite near Keswick and travelling from home to the hospital would have meant a four hour round trip every day. Faced with the decision to travel each day or tolerate the high costs of accommodation nearby, The Sick Children’s Trust really helped us out. It was an absolute blessing that we were able to have the whole family together and a huge weight off of our shoulders. It meant we could concentrate on Joshua getting better, as well as on our other children. As it was during the summer holidays, our eldest son Harvey was off school. This was his first summer holiday and it would’ve been hard on him for mum, dad and new brothers to not be around. Thanks to Crawford House we were able to avoid that. This was like a little adventure for him; we were able to give him the summer holiday he deserved, while still caring for our poorly little Joshua. It helped us all that we had our family together in a place where we felt comfortable and relaxed. Being at Crawford House also meant we could spend more time with Joshua on the ward. The nursing staff would often comment that he seemed more settled when we were there, which provided great comfort to us. The house afforded us a place to spend some time doing normal family things. We enjoyed our family meals, Harvey loved the playroom where he made many friends, and we found it helpful being around other families. When faced with a sick child, we found that the only people who truly understood what we were going through were the other parents in similar situations. We found great comfort and reassurance from speaking to them and sharing experiences. Our House Manager played a huge role during our stay at Crawford House and we couldn’t have asked for anything better. Gail was very helpful and supportive throughout our entire time at the house. She would give us information when needed and would always ask how things were going, yet at the same time she gave us space to feel independent and as if we were in our own home. Being on the ward is draining and after a time it becomes hard. Having a private space meant we could recharge to be ready for the next day. Gail made that possible for us. Our stay at Crawford House lasted from 1st August to 16th September 2011. Now Joshua is doing well and putting on weight. He does not require further surgery and the outlook is good. We will always have a special place in our hearts for The Sick Children’s Trust for allowing us to keep our family together and providing limitless support during an extremely difficult time. I can’t imagine what the situation would have been like if we hadn’t had this charity. Steve Hamer, Joshua’s dad