Eckersley House made a world of difference to us...

We were not aware of The Sick Children’s Trust until we found ourselves in need of their help, but now we don’t know what we would have done without them. When my partner, Maxwell and I found out at my 20 week scan at Hull Royal Infirmary that our baby had Hypoplastic Right Heart Syndrome (HRHS), a condition where the right atrium and right ventricle are under-developed, we were really shocked. We are first time parents and I think you always expect that everything is going to be ok. When we were told it wasn’t, we were devastated. We had to go to Leeds General Infirmary (LGI), a specialist hospital, to have more scans to check on our baby’s condition which in itself really frightened us. We were told that there was nothing that could be done until our baby was born, so all we could do was wait. For the remainder of my pregnancy, doctors kept a close eye on the baby and I, and what was supposed to be an exciting time for us became a time filled with anxiety and apprehension. We had no idea what to expect when he was born and we were just praying that everything would be ok. I was a week past my due date when I was told that I would need to be induced at the LGI so that if there were any complications, all the cardiac staff would be on hand to help. After three days of waiting to be induced our lovely little boy, Flynn was delivered on 16th July 2012, eleven days late, weighing 8 pounds, 10 ounces. We were thrilled and so excited to meet him, but this soon turned to worry when he had to be whisked off to the neo-natal intensive care ward (NICU) for assessment. Flynn had to stay on NICU because of his heart condition and we were unable to stay with him, as the staff on the ward worked on a one to one basis with every child and there wasn’t enough room for families to stay. We live in Hull which is over 60 miles away from the hospital and over an hour’s journey away by train. We knew that we couldn’t leave Flynn’s side; the thought of him being alone in hospital was unimaginable, and we never wanted to be that far away from him. Fortunately we didn’t have to be, as we were offered a room in The Sick Children’s Trust’s Eckersley House. The Sick Children’s Trust runs free ‘Home from Home’ accommodation for families who have seriously ill children in hospital. The nurses on Flynn’s ward gave us directions to the accommodation and when we arrived Caroline, a house assistant at Eckersley House welcomed us in and gave us a guided tour around the ‘Home from Home’. A weight was immediately lifted off our shoulders. We had wanted to focus our attention solely on Flynn but we had been forced to worry about the practicalities of what we were going to do and where we were going to stay. When we were told about Eckersley House, all this worry immediately disappeared. The house was brilliant as it was just across the road from the hospital, only a five minute walk from Flynn’s ward and the hospital’s breast feeding facilities, which was essential for me as a new mum. The house had everything you could possibly need: a clean kitchen, bedroom, bathroom and laundry room. It really felt like a second home to us; we could cook a home-made meal, have a shower and get a clean change of clothes. I really think that doing this helped to keep our spirits up and keep us positive for Flynn, which is what we needed to be, to help him recover. After four days on the ward, we were told that Flynn’s condition was much more complex than the doctors first thought. He needed open heart surgery to treat his condition, however even with the surgery there was a 50 per cent chance that he may not survive. We were distraught, we couldn’t believe what was happening; our little boy had only been in the world four days and there was a chance he may not make it through his operation. There was nothing we could do and we felt totally helpless. We couldn’t face the possibility of saying goodbye to Flynn but without the heart surgery, we were told that he wouldn’t survive past ten days. Flynn had the open heart surgery and was in theatre for a total of eleven and a half hours. I can honestly say this was the longest day of our lives and there was nothing we could do but try and wait patiently, repeating to ourselves that he was in the best place. Finally, after what seemed like a lifetime, Flynn came out of his operation and came through. I cannot even begin to explain what we felt when we saw him. We were thrilled and although he still had a long way to go, we were so happy that he was past the operation and on the road to recovery. Staying in Eckersley House meant that we could stay together as a family and bond with our new son. We were only ever five minutes away from Flynn, so we never missed anything and we could relax in the house knowing if anything was to suddenly happen and alter his condition, we could be there really quickly. There was also a phone in our room which was connected directly to Flynn’s ward so we could be notified at any time of any change. Flynn stayed in hospital for a further ten days following his operation before we were able to take him home with us on 31 July and start our new life as a family. Since then, Flynn has had lots of follow up appointments and has been closely monitored for his condition. We recently took him back to the LGI on the 6 June as he had to have a second major heart operation, the Glenn Procedure. He was in theatre for six hours and spent a further eight days in hospital recovering. During this time we were very lucky to be welcomed into Eckersley House once again which ensured both Maxwell and I could be there for Flynn while he recovered. Flynn has just had his first birthday and has had a really hard first year with two major heart surgeries. We feel so lucky that he has grown into a healthy little boy who is learning to walk and is almost talking. He is amazing and our little family is together at home where we belong. Eckersley House made a world of difference to us; it took all the stress and worry away of where we were going to stay and ensured we could always be together. Not only this but the emotional support we received from the staff was incredible; they are so understanding and are always there for you if you need them. We will be forever grateful for the support The Sick Children’s Trust gave us and we will never forget the staff at Eckersley House. Stef Westmorland, Flynn’s Mum

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

Imagine being told that every second with your child could be your last...

Imagine being told that every second with your child could be your last and realising that you couldn’t stay with them at a time when they need you most. It is an impossible thought but it is one that my husband Bob and I had to think of when we were told that our darling Jacob Bear might not make it through the night. Thankfully we could be by Jacob’s side because of the ‘Home from Home’ accommodation provided by The Sick Children’s Trust. Our story began on the 6th December 2010 when our baby boy Jacob was born by Caesarean at Addenbrooke’s Hospital in Cambridge, our local hospital. We were so excited and just completely overwhelmed with love for him, we couldn’t wait to take him home and although he stayed in hospital for a week following his birth to help with his feeding, soon we were all home together as a family. When Jacob was six weeks old, his doctors became worried that he wasn’t smiling yet. They found that Jacob had no red reflex in his left eye and we were told to see a consultant who diagnosed Jacob with Unilateral Cataract and he was scheduled in for treatment in March 2011. We were really worried, but we were grateful he had been diagnosed and booked in for treatment. However, while we were waiting for this operation, Jacob was also diagnosed with mild hearing loss in both ears. I immediately thought that Jacob’s eyesight and hearing must be connected, but the doctors didn’t think there was any connection. However, only two weeks later Jacob’s feeding began to deteriorate. He would refuse one or two feeds daily and we noticed that he was really sleepy and could only stay awake for a few hours at a time. We knew this wasn’t normal especially as when I took him to a postnatal group the difference between him and the other children was clear. The other children would all be lying on the floor kicking and playing and Jacob wasn’t. I became really anxious about Jacob’s condition and took him to the doctors multiple times over the next few months. But they just seemed to repeat that all babies start to do things at different times and it was nothing to worry about. Jacob was not sitting, rolling over or holding things like his friends. Jacob was finally referred to the Early Intervention Team in July 2011 and we made appointments with the paediatrician and a physiotherapist. We felt so much better knowing that we were going to receive support and specialists were going to help Jacob with his movements, we even noticed that he was beginning to smile more and sit up in his high chair; he seemed to be so much more alert. Just when we felt like things were improving for Jacob and everything was going to be okay, in early September he began to become really withdrawn. He became really tired again all the time and wasn’t eating as much as he had been. I took him to the doctors again but they told me he was probably just at the beginning of a cold or virus and it would pass. I just knew this wasn’t right, I knew Jacob and I knew then that it was more serious than a cold. In the days that followed Jacob started to bring his legs up to his belly and it looked like he was really straining himself. He then one day had what we thought was a seizure. We took him to the GP and were told to come back if it happened again. It did and we rushed him straight to A&E, he was admitted straight away that night as he was having multiple seizures. It was horrible to see him struggling so much, knowing there was nothing we could do; we felt so helpless. The doctors took an Electroencephalography scan which is the recording of electrical activity along the scalp, which showed that he had chaotic brain activity and they immediately started treating him for epilepsy. They carried out other tests as well, but they all came back normal. The doctors felt that Jacob’s developmental delay and seizures could be connected so they referred him to the genetic team before sending us home just over a week later with no concrete diagnosis. We were really frustrated and scared, at this point Jacob was seizing up to 16 times a day for up to 20 minutes at a time. We were terrified; we tried multiple medication types and even high dose steroids. These did work for a little bit and brought our happy little boy back to us. He smiled and tried to communicate with us but as soon as the dose was reduced, his condition deteriorated again. We were so upset, doctors were unable to diagnose Jacob and couldn’t explain his seizures and we certainly had no idea what was happening; we were devastated. All Jacob’s genetic tests came back negative although his seizures began to lengthen and at times they began to last over 20 minutes at a time. The doctors told us that they suspected he may have Mitochondrial Disease which is a terminal illness. We tried to remain as positive as we could; we had to for Jacob’s sake but as well for ourselves. If we were going to help Jacob through this, we had to remain strong. Jacob was only one year old, it was impossible to think that we were going to lose him so soon. Besides, all tests were coming back negative so nothing was confirmed yet; we refused to believe what we were being told and wouldn’t give up. Jacob had a repeat MRI scan, a lumbar puncture and biopsies of his skin and muscles in the February of 2012. We were called in to see the doctor. They showed us his scan and pointed out that his brain stem was largely fluid and showed us the large lesions of dead brain tissue, they then mentioned Leigh’s disease and Alpher’s disease, they said they were unable to confirm which disease it was until further tests came back, but that we should expect the worst and we had very little time left with him. We were heartbroken. The thought of Jacob leaving us and the world at only one year old was devastating. We loved him so much and he was everything to us, the thought of carrying out our lives without him was just unthinkable. We were experiencing our worst nightmare and there was absolutely nothing we could do to help him. We took Jacob home with us and tried to carry on as normal as best as we could. A few weeks later Jacob woke up with a temperature and he was resisting taking his medication. We rushed him straight to A&E and he was diagnosed with a chest infection. Only three days later, late one night, he stopped breathing and we were told he was being moved to the Paediatric Intensive Care Unit (PICU). We were told that he may not make it through the night and we should start to say our goodbyes. We spent the whole night with Jacob and he did make it through. But the following day we were told by his doctors they felt sure he had Leigh's Disease which is a Mitochondrial Disease and there was a high chance that Jacob would not be coming home with us again. We wanted to spend as much time as we could with our Jacob, so we didn’t even think about going home. We live 25 miles away in Sutton, near Ely, which is over an hour’s drive away, and the thought of being this far away from him in such a vulnerable condition was just unimaginable, but we were unable to stay on the ward either. It was when we were facing this situation that we were offered a room in The Sick Children’s Trust’s Acorn House. I cannot begin to explain the weight that was lifted off our shoulders. It really was a ‘Home from Home’ and what was fantastic is it was free to stay and there was no paperwork to go through. A nurse on Jacob’s ward simply handed me the keys at about 4 o’clock in the morning and the room was ours. Bob and I were exhausted so it was amazing to just be able to go back to a safe place and rest. The house itself was brilliant; it was only around the corner from Jacob’s ward and it took less than five minutes to walk there. Our bedroom even had a phone line connected straight to the ward which was great if the nurses needed to contact us, but also because I could call through at any time. I remember waking up in the middle of the night sometimes and just phoning through to make sure everything was ok. We began to prepare for the worst and family and friends came to visit Jacob on the ward to say goodbye. We cried every day by his bed side. We even got Jacob christened in PICU, which was a really emotional service but lovely to do for him at the same time. Acorn House helped us in so many ways. With so many family members and friends coming to visit Jacob, it was so helpful to have the house that we could take them back to, for a cup of tea and a proper chat or just some much needed peace and quiet. It also gave Bob and I a sense of normality at a time when our world was turned upside down. We were able to cook a home-made meal and sit on the sofa while watching the TV. It also helped to have other families around us who knew what we were going through. They immediately understood and could sympathise with our situation. We are still in touch with some of the families we met in the house now and they have become good friends. Having our bedroom to go back to at night was really helpful to us too, especially knowing the upsetting news that Jacob didn’t have much time left. The ward was a constant hub of noise and chaos. Having the quietness of our bedroom ensured we had a place we could go to cry and let all our emotions out. We needed to grieve and come to terms with what we had been told and having our own space was essential to do this. I sat with Jacob every day and begged him to come back to us, to just open his eyes and come home. He couldn’t leave the world yet, we had so much we wanted to do with him, he had so much left to experience, he couldn’t leave us. Jacob listened to me and was able to come home after two weeks in PICU. Doctors asked us what we wanted them to do if the situation was to happen again and we made the heart wrenching decision for them not to intubate him. Bob took a couple of months off work and we made a list of things we wanted Jacob to do before he died, making his last few months as happy as possible for him. Sadly just over two weeks later at 11:30am on the 20th April 2012 our darling Jacob died peacefully in my arms with his Daddy holding his hand. We miss Jacob every day and there will always be a hole in our lives because he had to leave the world so soon. Jacob was with us for just 501 days but he changed the lives of Bob and I and hundreds of other people (over 200 came to his funeral). We will be forever grateful to The Sick Children’s Trust for enabling us to spend as much time as possible with our Jacob Bear. Without them, we would have faced sleepless nights on the hospital floor or in the car, as there was no way we were going to leave his side and go home. Claire, Jacob’s Mum.

We will always value the accommodation run by The Sick Children's Trust...

The Sick Children’s Trust were there for us when we needed them most and they made a really terrible time in our lives a lot easier to manage. My husband Lee and I stayed in Guilford Street House for four weeks in July 2012 when our son Matthew was taken in to Great Ormond Street Hospital. Matthew was only three weeks old when he developed a cough and after three days without improvement we decided to take him to our GP, who diagnosed him with pertussis, more commonly known as whooping cough. He said that we should take him straight to Accident and Emergency at Barnet Hospital, our local hospital which really worried us. We had heard of whooping cough before and knew it was serious but having to take him to hospital was especially frightening. Matthew was admitted into the children’s ward that day and over the next few days his condition deteriorated; he was really struggling to breathe and his doctors decided that to give his body a rest, they would put him on a ventilator. However, even on the ventilator Matthew’s condition didn’t improve and after a further assessment from doctors, we were told the only way to stabilise him would be for him to go on Extracorporeal Membrane Oxygenation (ECMO,) a machine that is operated outside the body that continuously pumps oxygen into the blood. There are only three hospitals that offer this treatment in the UK, so in order for Matthew to be put on this life saving machine he had to be transferred to Great Ormond Street Hospital (GOSH) in central London. We couldn’t believe what was happening, Matthew was still so tiny and to know that he needed life saving treatment was terrifying. Matthew was in such a vulnerable condition that he had to be transferred to GOSH by The Children’s Acute Transfer Service (CATS,) which is an ambulance service that specialises in transferring children in intensive care. It took them three hours to get Matthew ready to transfer and after the long journey to GOSH it took another three hours to stabilise him on an oscillator. I can safely say that this was one of the longest days of my life. At three weeks old, the last thing I imagined I would be doing with by baby boy was spending time in GOSH. Matthew’s condition seemed to become so serious so quickly and it seemed like it could change at any moment. Our home is in Finchley, North London which is an hour away from GOSH. There was no way we could contemplate going back home and leaving our little boy on his own, so with no accommodation on his ward for us, we spent the first night sleeping on the floor of one of the meeting rooms in the Neonatal Intensive Care Unit (NICU). It was awful and I remember us both thinking that we should prepare for the worst as Matthew’s condition wasn’t improving and he was surviving at that moment because of the ECMO. Matthew made it through that first night and we realised that to stay close to him, we would need to find accommodation close by. We couldn’t spend the foreseeable future sleeping on the floor of NICU but we were also not going to go home and leave him, so this was our only option. We went down to talk to the Parent Advice and Liason Services in the hospital and they told us that GOSH didn’t have any rooms left that we could stay in but that we may be able to stay in Guilford Street House, a ‘Home from Home’ run by The Sick Children’s Trust. They phoned Tina, the house manager who said that they could offer us a room. I can’t begin to explain the relief that swept over us. The house was fantastic and it really became invaluable to us. Matthew was diagnosed at GOSH with pertussis and double pneumonia and spent over three weeks on the oscillator. We spent this whole time by his side and were only able to do this because we had Guilford Street House so close by. This was amazing as since the house was less than a five minute walk from his ward it meant we would never be too far away from our little boy. I just simply couldn’t face going home without him – I did go once during the three weeks and it was really upsetting. It didn’t feel right going home without him; seeing all the lovely gifts we had received from our family and friends for him just made me feel so much worse. There was no charge to stay in the house, which was great. Neither of us went to work when Matthew was in GOSH as we couldn’t deal with not being with him, so the free accommodation helped us to ensure we could keep up with the everyday payments at home. If we’d had to find alternative accommodation in London, it would have been really expensive and put an extra stress on us, which I really don’t think we could have coped with. We were also really lucky in that we didn’t even need to worry about our house as my mum was over from Australia and staying there with Lee’s mum who travelled from Wales. They both came to visit us at GOSH and it was really great to have Guilford Street House to take them back to. We could have a proper chat with them over a cup of coffee in a quiet environment away from the hospital. After three weeks in GOSH Matthew was taken off the oscillator and we were thrilled. Although he still needed a ventilator, this was a big improvement and we could finally say that he was one step closer to recovery and to coming home with us. It is such an emotional time seeing your child poorly in hospital, and between this and all the chaos and noise on the wards it was easy for the hospital environment to become too much. We had to wear masks whenever we were in Matthew’s room because pertussis is contagious. We found it hard to spend more than a few hours at a time in his room because of this, so we would often take it in turns to go back to the house and catch up on sleep during the day. It was great to be able to do this as it was essential for us both to rest in order to stay strong for Matthew but also, as we took it in turns it meant he was never on his own. There was also a phone in our room that was connected directly to Matthew’s bedside, so if there was ever any change in his condition, the nurses could notify us straight away. They did kindly call us on the phone once during the night to let us know that they had to re-ventilate Matthew, so that we wouldn’t be shocked when we saw him. The house had all the facilities you could possibly need; a clean bedroom, bathroom, kitchen and lounge area. It was great as it really made us feel at home and normal again but at the same time we were very aware that things were not normal in our lives. One thing we will never forget about the house is the emotional support we received. There were many families in the house, all going through similar situations to us and it was nice to talk to them when we got back from long days at the hospital. Tina was a wonderful support to us; she always had a smile for us and would always ask after Matthew. The support she gave us, even if it was just a chat over a cup of tea, made a lot of difference. After nearly five weeks in GOSH Matthew started breathing on his own and has recovered well. He still has very damaged lungs, but he is growing into a strong little boy and he is at home where he belongs. Since the outbreak of pertussis in the UK in 2012, women are now offered immunisation in the last few months of pregnancy to give their child immunity from the condition. As much as I wish this had been the case when I was pregnant with Matthew, I am so pleased that hopefully fewer families will have to go through what we have in the future. Since coming out of hospital Matthew has been ill with many different viruses and illnesses but he is here with us which is the most important thing. He is still under a respiratory consultant at GOSH with whom we still have regular appointments, and each time we visit we try and pop in to see Tina too. We will always value the accommodation run by The Sick Children’s Trust and we will never forget the help they gave us. Michelle Williams, Matthew’s Mum

We were both really worried and stressed, everything seemed to be happening really fast and we were so far away from home...

It was at a time when we were both upset and exhausted, as we thought we might have to face the prospect of leaving our poorly baby,that we were made aware of The Sick Children’s Trust and Chestnut House. My husband Nick and I were told at my 20 week scan that our baby had a condition called Foetal Hydrops, which meant that there was fluid present in the foetal compartments. We were also told that Isaac was suffering from a heart condition whereby his heart was beating far faster than it should have been. I was put on medication for the remainder of my pregnancy to try and bring his heart rate down, and we also had to go for regular check-ups at Great Ormond Street Hospital in London every three to four weeks. This did really worry us but we thought with the medication and regular appointments with the doctor, it would be under control. The medication did begin to regulate Isaac’s heart rate but at 27 weeks into my pregnancy the fluid started to return, which is why at 31 weeks we were told I needed an emergency C-section. We were terrified - I think you always immediately think the worst when you are told your baby will have to be delivered early. On Boxing Day 2012 our little boy Isaac was born. Isaac was delivered in The Rosie hospital in Cambridge as the seriousness of his condition meant that he needed specialist care that our local hospital in Peterborough were unable to provide. We were both really worried and stressed with the whole situation, everything seemed to be happening really fast and we were so far away from our home in Lincolnshire and our family. This was when we met Alan, the House Manager of Chestnut House. He whisked us away to the house and we cannot begin to explain the relief that swept over us. Chestnut House is a ‘Home from Home’ run by The Sick Children’s Trust which is a charity that provides free accommodation for families that have seriously ill children in hospital. The house was great as it gave us a private space to get away from the busyness of the ward and gather our thoughts. It had all the facilities we needed to look after ourselves; a private bedroom, clean bathroom, kitchen and even laundry room. The best thing about the house was its close proximity to Isaac. The house was located within the hospital grounds and only a two minute walk away from Isaac’s bedside so we could be with him in no time if we were ever needed urgently. It was also really important for me; because I had a C-Section I was told to rest as much as possible, so being close to Isaac meant that I did not put too much strain on myself and it allowed me to recover more quickly, which is what I needed if I was to look after Isaac and remain strong for him. I think being in the house generally helped our well-being. We were really able to look after ourselves which helped keep our energy levels up for Isaac. We made home-made meals every night which was fantastic. If we hadn’t had the kitchen to do this we would have had to live on takeaways and fast foods. This wouldn’t have helped our mentality at all and especially wouldn’t have helped the quality of breast milk I was feeding Isaac. We also met a lot of families in Chestnut House that were in similar situations to us - it was good to have them to talk to and it really reinforced for us the importance of the accommodation that The Sick Children’s Trust provides. Nick and I have two other children, Leah aged 13 and Harry aged 5. We were really lucky that while we were staying in Chestnut House they were able to stay with their grandparents and have that stability. Of course they came to visit us, which was lovely as we missed them so much and they wanted to meet their new little brother. It was really great being able to bring them in to the house and show them where we were staying. It also enabled us to spend some quality time with them in a quiet environment away from the hustle and bustle of the hospital. We had heard about The Sick Children’s Trust before we stayed in Chestnut House, but we didn’t really know about the work they did before we came to be in the situation of needing their help. Quite simply, without the ‘Home from Home’ they and Alan provided, we don’t know how we would have coped. The house offered everything we could possibly need, and Alan was amazing. Nothing was ever too much for him, he put us both at ease the moment we met him and his open door policy ensured that we could call on him for anything if we needed to. One thing that really surprised me by staying in the house is how clean it remained; when you’re living in a house full of people you don’t know, you wouldn’t expect the high standards of cleanliness we experienced and I really believe this is down to the way the house is managed and looked after. Isaac is home now where he belongs. During his three and a half weeks in hospital he received lots of treatments to help him recover from his heart condition. He spent the first two weeks in The Rosie hospital and was then transferred to Peterborough for the remaining week and a half. Since then he has been to lots of follow up appointments. We are now so happy to be able to say that in April 2013 he received the all clear from the Cardiology department and he is doing really well. His heart condition seems to have fully resolved along with the Foetal Hydrops. Doctors at the hospital told us that they are still unsure why Isaac’s condition took such a bad turn and that he will remain a ‘mystery baby’. But the main thing is that Isaac is home now and is growing into a healthy little boy. We are really thankful to The Sick Children’s Trust for enabling us to stay by Isaac’s side the whole time he was in hospital. Without their help I really don’t know what we would have done or how we would have coped with the situation. Nicola Butler, Isaac’s Mum

At 36 weeks into my pregnancy, my husband Jay and I thought we would be full of excitement....

At 36 weeks into my pregnancy, my husband Jay and I thought we would be full of excitement preparing for the arrival of our baby. Instead we felt apprehensive and worried. At our 36 week scan, doctors noticed that our baby was in an excess of amniotic fluid which meant that he was not swallowing fluid as he should be. They concluded that this was because his ‘stomach bubble’ was very small and as a result of this he may be born with Tracheo Oesophageal Fistula (TOF). This is a condition which occurs when the oesophagus, the food pipe which connects the mouth with the stomach, is blocked. After telling us this news, they told us they wouldn’t be able to confirm the condition until he was born, which as you can imagine made us feel very uneasy for the remainder of my pregnancy. On 27 November 2012 our gorgeous baby boy, Winter Jay Hamilton was born at 39 weeks, weighing six pounds, six ounces at Hinchingbrooke Hospital. We were so happy and so excited but this was short lived when doctors confirmed that Winter did have a blockage in his oesophagus. They told us he would have to go straight to the Neonatal Intensive Care Unit (NICU) at The Rosie Hospital in Cambridge, to be operated on the next day. This was about a 45 minute journey away from our home in Wyboston, St Neots, but we couldn’t even think about the practicalities of anything at that moment. We just knew we had to get Winter the best possible treatment available and for him that was at The Rosie Hospital. Winter had an operation to repair his oesophagus the following day. Jay and I were so upset; our little boy had only been in the world one day and already had to go through all of this distress. We could think of nothing else but his recovery and didn’t want to leave his side. We hadn’t even thought about where we were going to stay until we met Alan, the house manager of Chestnut House. He offered us a room in the ‘Home from Home’ accommodation that the charity, The Sick Children’s Trust, provides and I cannot begin to describe the relief that swept over us. The house was brilliant because it was just below the NICU, so we would never be too far away from Winter and it really took an extra weight off our minds; we didn’t need to try and find somewhere to stay or worry about the financial costs this would incur. We were able to stay in Chestnut House free of charge for however long Winter was in hospital and we would never be more than a two minute lift ride away from him. The house facilities offered us everything we needed; there was a clean kitchen, bedroom, bathroom and even a laundry room as well. Winter’s recovery was the only thing we could think about but having the house ensured we could look after ourselves too. Although this was far from our minds at the time, looking back it was really important as getting some much needed rest and eating nutritional meals enabled us to keep our strength up and stay strong for Winter. Staying in the house also helped to give us a sense of normality in what was such a stressful and chaotic situation. We could put a load of washing on and cook a home-made meal. It sounds ridiculous now valuing these things so much, but at the time these tasks really helped us to cope with the situation. The first few days that Winter was in intensive care were heart breaking as we saw him sedated and covered in tubes from all different kinds of medical machines. It was horrible to see but we knew he was in the best place and he was being looked after. As the days went by Winter was getting much stronger. On the third day following his operation we were able to change his bedding and his nappy for the first time. It was such a big step and we were so happy to be able to do this. Doctors also showed us how to wash his little face and how to keep his lips moist. It was amazing to be able to do this ourselves, after watching only nurses and doctors do this so far and although we were welcoming parenthood a little differently to others, we were so excited. After a week in intensive care Winter’s doctors gradually reduced his medication and took him off his ventilator. We were so pleased; it was awful to see Winter taking in all this medication and without his ventilator we could finally see his beautiful little face properly. He was able to breathe all on his own, which was amazing, and we could finally see him on his way to recovery. Following this he had his chest drain and cannulas (tubes used to administer his medicine) removed which meant he only had the trans-anastomotic tube (TAT) left in for feeding. The nurses gradually began to up his feeds and we were thrilled; Winter was getting better and better. We were relieved; it seemed the worst was over. We could even have our first proper cuddles with him which were long overdue. We began to have meetings with the speech and language therapist (SALT team) to try and feed Winter by mouth; they helped him to practise his sucking instinct so he could take in his feeds more easily. This was really helpful, not only for Winter but for us too. We learnt something new about Winter’s condition every day and became able to cope with his needs a lot better. It was only because we were staying so close to Winter in Chestnut House that we could do this and be there for him day and night. If we had been staying somewhere else or travelling home, we wouldn’t have been able to get to grips with his illness as quickly as we did. I think there is always a fear of the unknown and the more we understood his illness, the better we felt about it and the more positive we were. A lot of babies with TOF also have other complications to do with their spine and kidneys, which we were worried about, but Winter’s tests came back clear, which was great news. He became stronger every day and after ten days in intensive care he was transferred into the Children’s Ward ‘C3.’ It was very different and we even had our own bed so we could stay with Winter and start practising night times with him. When Winter moved wards we thought that the next step would be to take him home. However he started experiencing reflux; a condition where milk swallowed starts to come back up into the oesophagus. Lots of babies suffer from reflux but because Winter had TOF as well, the surgeons said if the appropriate medication didn’t work he may need another operation. This would mean it would be weeks before we could take him home, not days as we had thought, which was devastating. Luckily the reflux medication slowly began to take effect and the doctors were a lot happier with his condition. After an x-ray video contrast (an x-ray taken while Winter was feeding), we were able to meet with the SALT team once again, the nutritionist and dietician. They were all really pleased with Winter’s progress and told us we could finally take him home. So on the 20 December 2012 we were able to take our little boy home, just in time for Christmas. Winter’s total hospital stay was just over three weeks and at fourteen weeks old he had his feeding tube taken out. He has made massive progress since; he is now taking all his food orally and has even started taking some purees. We are so thankful to The Sick Children’s Trust for offering us accommodation the whole time Winter was in hospital. Lucy Hamilton, Winter’s Mum

My son Joseph was born 12 weeks premature on 5 October 2012...

The Sick Children’s Trust’s Chestnut House supported my family when my son, Joseph was born 12 weeks premature on 5 October 2012 at the Rosie hospital in Cambridge. As you can imagine, being so premature Joseph was so tiny and because of this he had lots of complications and he had to stay on the Neonatal Intensive Care Unit. From the moment he was born we were on tender hooks with him. He was all we could think about from day one. When he was just four days old he was rushed for emergency surgery as he had a suspected perforated bowel. This turned to be three small holes in his bowels which that had to be cut and a stoma created. We were so worried as he couldn't breathe unaided and was on CPAP to assist his breathing. I kept thinking he was just so little, how could I help him? For the first week of his life I stayed on the post natal ward at the hospital but after this I was fortunate enough to stay at Chestnut House, a ‘Home from Home’ provided by the charity The Sick Children’s Trust that provides free accommodation for families of sick babies at the hospital. This was a god send for us as it meant we could be there for Joseph day and night if needed and because the charity is on the hospitals grounds it’s just moments away from the ward which reassured us no end. And even though Joseph was too young to know we were there it was important for me to be there by his side as much as possible. Chestnut House became my home for nearly a month. It was lovely having a place away from the ward I could retreat to and have lunch, read for a while if Joseph was sleeping and just 'take a breath'. As I lived just over an hour away from the hospital in Suffolk but also due to my health (I've had a kidney transplant and a heart attack) the added stress of having to travel would of made me really poorly, so knowing I was right there with Joseph really did mean a lot to me and my health. Unfortunately my partner couldn't stay with me at the house as he had to return to work, but when he did come to the hospital to visit it was really important that there was somewhere we could go and eat a normal cooked dinner instead of getting something from the canteen in the hospital. We’d try to relax a little and just be there for each other and this helped make us feel ‘normal’ again. My mum even stayed at the house with me on one occasion which was lovely just to have some company. As there was a phone in my room with a direct line to the ward it was very reassuring to know that I could ring the ward from my room anytime of the day and also that the ward could contact me if they needed to. It was really helpful being with other families too as we could all support each other as we were all going through the same thing, to be able to talk to parents that know how you are feeling and not just emphasising with you. Nearly seven weeks after Joseph was born he was transferred back to our local hospital in West Suffolk where he stayed for two weeks before being transferred back to the Rosie hospital to undergo surgery to reverse his stoma. I once again stayed at Chestnut House for just over a week and it was so reassuring to be in familiar surroundings again – it was almost like coming home. Alan Booth the house manager was an incredible support to me, I feel we bonded well and just having a normal chat with him sometimes would just help to relax me. Joseph is now a happy, healthy seven month old little boy and is thriving, he is catching up with his weight and we have just started to wean him, which is great fun. He has been discharged from Addenbrooke’s Hospital and now so we are just under our local hospital. To be perfectly honest I hadn't heard of The Sick Children's Trust until I stayed in the house and it really is true to say that it’s one of those charities that you don’t really realise how important a role they play until you need them, and then you realise that you going through this experience without them would have been very different. I don’t know how I will ever thank them for their support but I am currently organising a family fun day in aid of them to try and show them how much they mean to me and my family. Kelly Hill, Joseph’s mum

We had planned Rokie's arrival so differently, but for the weeks following his birth we spent every day in hospital...

Our son Rokie was born at Sheffields Children’s Hospital on the 15th October 2012 and for the next six weeks The Sick Children’s Trust’s Treetop House became our home. We had planned his arrival so differently, but for the weeks following his birth we spent every day in hospital by his bedside. At eight weeks into my pregnancy I had a scan that revealed Rokie had a condition called Gastroshcisis, which meant that his bowel was protruding on to the outside of his body. Rokie’s condition was a shock to both my partner Arren and I and we were so concerned for him. The doctors told us that they would have to wait until he was born to treat the condition. I think throughout pregnancy you worry generally, but in my case the early diagnosis of Rokie’s condition made me constantly nervous and anxious about what would happen when my little boy was born. Shortly after Rokie’s birth in October, doctors started to treat him for Gastroshcisis, by using the silo bag treatment. The treatment is started by sliding the intestine into a silo bag and then over the next few days the intestine is gently squeezed back into the abdomen. It is a slow process that takes place over many days but we were told that it was an effective way to treat Rokie’s condition, without him having surgery. The nature of the treatment meant that each new day presented a different situation, there was a constant worry, wondering how it was going to go every day. There was no way that we were going to leave Rokie alone in hospital, especially when he was undergoing treatment that could alter his condition at any moment; which is why we were so relieved when the nurses on Rokie’s ward told us about Treetop House. We wanted to be by his side every step of the way and the ‘Home from Home’ run by The Sick Children’s Trust charity enabled us to do just that. Treetop House provided accommodation for Arren and I and also our other two children, Cayc aged three and Coby aged two. It took such a weight off our minds knowing that we could all stay together as a family and be close to Rokie. Without our room at the house our family would have been separated and Cayc and Coby wouldn’t have been able to get to know their new younger brother. The silo bag treatment seemed to be going really well at first and the intestine had almost fully gone back into Rokie’s abdomen. However when I went down to see him on the sixth day of treatment, I knew there was something wrong. Rokie didn’t seem like himself and by the evening he became really unsettled and started to scream, which was really unlike him. Being able to stay just a lift ride away from Rokie in Treetop House meant that we could spend all our time with him and really get to know him and it was because of this I knew that there was something wrong and he wasn’t himself. The doctors rushed to Rokie’s bedside and said that the silo bag wasn’t working as well as they had hoped. I can safely say that the day that followed was the longest of my life; Rokie had to have many different tests across the course of the day and we stayed with him all day and night. We were so worried what the outcome of the tests would be and what the results would mean for him. Rokie’s doctors told us that he would have to have surgery immediately to treat his condition. He was still so tiny, we couldn’t believe what our little boy was having to go through so early on in his life. We were terrified for him but we knew he was getting the best possible care he could and that he had to have this operation. Having accommodation so close to the ward to go back to was invaluable; we were able to stay with Rokie all day and evening without worrying about travelling home, as we only had a two minute lift ride to Treetop House. The house really did become a ‘Home from Home’ for us, we felt so comfortable and the facilities were amazing. We could cook home-made meals, which was vital for us because the food available at the hospital would have cost a lot when added up over the weeks and it wasn’t the most nutritional food for a growing family either. There was also a playroom in the house which was great for the children. It meant we could relax and rest when we were at the house while they could happily play. The staff in the house really made the lovely atmosphere we experienced. They were so caring and there was always a friendly face to greet us when we were going in and out. The majority of our time we spent on the ward with Rokie, so we didn’t speak to the staff too much, but it was lovely to know that they were there for us if we needed them and we always gave them updates on how Rokie was getting on. Following Rokie’s first major surgery he had to have a few smaller operations but we are really happy to say that Rokie is now home. We still take him for check-ups every three months but he is doing really well and we are so pleased. The Sick Children’s Trust helped us when we needed them most. We will never forget the help they gave to us; we were facing such a difficult and stressful time and they enabled us to do this as a family by Rokie’s side. Kim Parkin, Rokie’s Mum

My husband and I have stayed at The Sick Children’s Trust’s Acorn House three times in the last year ...

My husband and I have stayed at The Sick Children’s Trust’s Acorn House three times in the last year and it really has been invaluable to us on our visits to Addenbrooke’s Hospital in Cambridge with our daughter. Our first and longest stay at Acorn House was for 30 days in which the house really did become our home. Ivy was diagnosed with Cerebral Palsy at only one year old and some months later was also diagnosed with epilepsy. She had been on medication for this and had suffered mild seizures. However in January of last year, Ivy suffered a severe seizure and was rushed to hospital. Doctors now suspect that Ivy has a genetic condition in addition to Cerebral Palsy. Since the seizure Ivy, has had a reduced quality of life and limited abilities. It would be extremely rare for a child to have both conditions but it is not impossible. We were heartbroken about the prospects of this, our funny joyful little girl had vanished overnight and we had a different child now with even more care needs that we could not make comfortable. It was hard to get through each day and we were constantly distraught. The Sick Children’s Trust provides private accommodation for families with sick children who are in hospital undergoing treatment. The charity runs eight ‘Homes from Home’ around the UK close by to six major children’s hospitals in the country. Without Acorn House we would not have coped, we live 1 hour drive from Cambridge, and we never wanted to leave Ivy alone. As a parent when your child is unwell the thought of leaving them alone in their most vulnerable state is unimaginable. I am self-employed, which meant that I did not earn when Ivy was in hospital, this meant we needed to control our spending. If we didn’t have Acorn House we would have spent huge amounts on accommodation and living expenses. To have Acorn House to get some respite was like being in a wonderful hotel. One of us would always rest while the other could stay by Ivy’s bed side. Ivy does not sleep well, and during her hospitalization her sleep was limited to about six hours. It was always reassuring to know that the nurse could directly call our room if there was the slightest change in Ivy’s condition. This was especially important when Ivy was unconscious and on a ventilator, it took Ivy six days to open her eyes. I really believe that if we had not been able to rest during Ivy’s hospital stays, we would not have been able to promote a positive vibe to her which definitely helped and still helps her recovery. We also made some really good friends while staying at the house. Every family staying in the house was going through the same experience, and so it helped to talk and realise that you were not alone. Joy, the house manager and her team were amazing, she always had a smile and was always there to help with everything. Acorn House gave us the strength to cope with the intense stress and worry. Towards the end of Ivy’s hospitalization we were even able to bring her to the house. This was so helpful when we needed to pack and prepare to leave. After a month, just being able to cross the road and sit in an armchair with her made a huge difference. Ivy now three years old, is still very unwell, but she is recovering slowly. We spend every second of the day working to rehabilitate her and fight for the best medical treatment available. We pray that the future is brighter for her now. Before Ivy became ill I knew nothing about The Sick Children’s Trust, but now I cannot imagine what we would have done while Ivy was in hospital without them or what we would do in future if they were not there for us. We cannot thank them enough. Jenny Knight, Ivy’s Mum

The birth of our daughter and first child, Rachel in January 2013 was such a difficult time

The birth of our daughter and first child, Rachel in January 2013 was such a difficult time, and The Sick Children’s Trust helped by providing us with free accommodation in its Treetop House at Sheffield Children’s Hospital. Rachel was born at Kings Mill Hospital in Sutton in Ashfield Nottinghamshire on the 23rd January, and diagnosed some 12 hours later with both Tracheo-Oesophageal Fistula (TOF) and Oesophageal Atresia (OA) which are rare congenital conditions that affect approximately 1 in 3,500 newborn babies. The pre-natal scans had shown no problems, so this was a complete shock to us both. These conditions require intensive neo-natal care and corrective surgery within days of birth, so Rachel was transferred from the Neonatal Intensive Care Unit at Kings Mill Hospital to the Neonatal Surgical Unit (NSU) at Sheffield Children’s Hospital, which specialises in this type of surgery. It was only then that we heard about The Sick Children's Trust, and my wife Lisa and I stayed in Treetop House from the 24th January to the 9th February 2013. With TOF, the food pipe (oesophagus) is connected to the windpipe. Without surgical intervention, this allows air to pass from the windpipe to the food pipe and stomach. It can also allow stomach acid to pass into the lungs. With OA, the food pipe (oesophagus) forms a closed off pouch that prevents food from reaching the stomach. Prior to surgery, this pouch can fill up with food and saliva, which can eventually overflow into the baby’s trachea (windpipe), entering the lungs and causing choking. With our home in Sutton in Ashfield, staying at Treetop House made family life (which, as for many people is important to us) so much easier, enabling us to be close to our daughter and to bond in the first few weeks of her life. My wife was able to express her milk and eventually start breastfeeding just before we left the hospital. It was an amazing achievement to go from saline drip, to tube, to bottle feeding and then eventually breast feeding all with her mother’s milk. This would have been a difficult process without the support of The Sick Children’s Trust. Treetop House is located just a lift ride away from the wards, so staying on site saved us a minimum of two hours travelling every day. It removed the stress of travelling in the bad weather (at this time it was snowing) and allowed us to be close to Rachel 24 hours a day. We could get up for her feeds and cares through the night and day, continuing the family bonding. Having somewhere to go and sleep throughout the night and day, to eat properly and relax made life so much easier and helped to keep our strength up and our emotions together. It also allowed us to mix with other families in a similar situation, which made us feel less alone. We are now at home and Rachel is recovering really well and showing no real signs of her ordeal apart from her need for various medicines. She will continue to have appointments with the consultants until she is sixteen, and further surgery may be necessary if feeding proves difficult later in life. We are so grateful for the support of The Sick Children’s Trust, since without them a difficult period in our life would have been even more stressful – for this we will never be able to thank them enough. Tim Ash, Rachel’s dad