The heart of the family.

Our daughter, Alanya, was just three years old when she was diagnosed with an Atrial Septal Defect (ASD) - a hole between two of the chambers of the heart. The condition means that blood leaks through the hole and the heart has to work harder to pump blood around the body. She had a very poor appetite from birth and always struggled to put weight on but we attributed this to her being premature as she was only 2lbs 13oz. Her cardiologist had hoped the hole would close on its own but at the cardiology review appointment in February 2011, we were told the hole had got bigger and her heart was already enlarged due to the extra work it was doing to pump blood around the body. It was here that we were told she would need open heart surgery to repair it. Although she was relatively symptom free, it was important to have the surgery while she was young to prevent long term damage to the heart and lungs later in life. However,as her case wasn’t regarded as an emergency we had to wait nearly a year for our date. From September 2011, we had two last minute cancellations due to Alanya being ill and an emergency case taking priority. After a fantastic Christmas break, Alanya returned to school on the 3rd January 2012. Little did we know that that day would be the day. At 10am the hospital called us and told us to pack our bags and come straight in as they had had a cancellation due to an illness and we had to be there at 2pm for Alanya to have surgery the next day. It was a rush but the only positive thing was it meant we had less time to sit and worry and although Andy, Alanya's dad, was working away we decided to go ahead as we knew he would be back the following day before she went to theatre. The night before the operation the hospital allowed me to stay with Alanya on the ward, but after this, due to lack of space, we had to find our own accommodation. This was when we found out about The Sick Children’s Trust and Eckersley House. We were told about the charity by other parents we met on the ward who were staying there. They gave fantastic reports about the staff and facilities. We had accommodation in the old annex for a few days but it was deserted and I didn't feel safe staying there alone when Andy wasn’t about so we asked the charity if they had room for us there and were delighted when they said they did. Alanya was in theatre for six long hours and returned to the Intensive Care Unit (ICU) ventilated and unconscious. Nothing can prepare you for seeing your child so poorly and as a parent you feel so helpless. Her surgeon told us that the hole was not as straightforward as first thought and Alanya had complete heart block following surgery. The electrical part of her heart was damaged as a result of the surgery. She had a temporary pacemaker which controlled her heart rate and rhythm. She was on ICU for a day then moved to the High Dependancy Unit (HDU) where she remained for the rest of her stay due to needing a temporary pacemaker and having her heart monitored. Her surgeon hoped her heart would return to normal rate and rhythm on its own but after seven days she was still in heart block. The team decided she needed further surgery for a pacemaker. Seven days after her initial surgery, we had to take her to theatre again. It broke my heart having to explain to her that she needed another operation, but she amazingly just took it all in her stride. This was a three hour operation. We thought, "Three hours? That's nothing in comparison to last week!" We knew the pacemaker surgery was needed in order to get home so we had a strange sense of relief as she went to theatre. It was one step nearer to going home. During the surgery, Eckersley House provided us with some respite. We managed to go over to the house and make some lunch and take a break from the clinical surroundings of the hospital. It provided a welcome distraction to do something ‘normal.’ Having the room at the house allowed us to stay just moments away from Alanya. If they wanted us at any time, either because Alanya was unwell or unsettled, we could be on the ward in five minutes. It provided us with a bit of breathing space to eat, drink, sleep, have a bath, as well as do the laundry and watch 10 minutes of television in a rare moment of down time. It really was our ‘Home from Home’. It helped to talk to other parents who were staying there for a bit of moral support. It can be a very lonely and stressful situation to be in and talking to others who were in the same situation helped us all. Families were often just calling back at Eckersley house in the late evening to get something to eat before heading back to their child on the ward. The Leeds General Infirmary also had their winter visiting policy in operation while Alanya was being treated. This meant that only parents could visit the ward to minimise the risk of infection. Eckersley House allowed family and friends to visit to offer support and have a drink without needing to sit in a busy hospital reception or dining room. After her second lot of surgery Alanya stayed on HDU that night. The next morning she came bounding down the ward to tell me the doctors had said she could go home the next day. Friday 13th! Lucky for us! Once home, we had fantastic support from family, friends and school. We are sure Alanya's speedy recovery was helped by her lovely school friends who were ecstatic to see her back at school even though she did a "show and tell" about her hospital stay including showing them her scar! We are happy to say that Alanya is really well now. She had seven weeks off school initially but is now back to full health. We have to go for pacemaker checks every few months and there are a few things she cannot do because of the pacemaker such as karate and contact sports. She doesn't let this worry her as she is a very 'pink’ girly girl. She does still need the pacemaker when her heart rate drops and it is reassuring to know it is there doing its job. She has gained weight and her appetite is huge. She has so much more energy and we struggle to keep up with her! I was a very proud mummy when she came first in the 100m sprint at sports day just five months after her open heart surgery, much to everyone's amazement. She will need further surgery in the future, either to replace the pacemaker or remove it if she no longer needs it and it is wonderful to know we can call on The Sick Childrens Trust’s Eckersley House again when the time comes. Vicky and Andy Rejterada, Alanya’s parents

Unless it happens to you...

Unless it happens to you, or someone close to you, you may not realise how vital a service a charity such as The Sick Children’s Trust provides. We are fortunate in the UK to have free health care at the point of need, but there are so many financial and practical implications when your child becomes sick that go beyond medicine and medical treatment. Our daughter, Gracie, was born in 2011 with cerebral palsy, and this has led to her needing a lot of intensive input from doctors and therapists in her young life, including several hospital stays. We are a little unusual as a family because Gracie’s dad, John, also has cerebral palsy; although this is a coincidence as the condition cannot be inherited. We had been staying in Filey, North Yorkshire, on our first family holiday since Gracie had been born, and a day or two before arriving, Gracie had been pronounced fit to travel. However, on holiday she developed breathing problems and she was taken to Leeds General Infirmary (LGI). We had the worry of Gracie being taken suddenly ill and needing wheelchair accessible accommodation (for John) in a city where we knew no-one. We live 200 miles away from Leeds in Ayrshire, Scotland. As it transpired, Gracie was more ill than we realised at first and she needed to be in the LGI for three weeks, some of the time in intensive care. The hospital itself could provide a room for one day’s stay, but although we were grateful to be able to finally get a sleep after being awake all night whilst Gracie was being stabilised by the medical staff, John had the added problem of the shower being inaccessible, so he was not able to do a basic thing like wash! We were considering checking into a hotel, an expense we could not afford, which we would have had to pay for with our credit card. Then a nurse mentioned Eckersley House. It made such a difference to us to be given a room there. They could not only provide us with a bed, but a home from home. It was such a relief to be able to stay minutes away from our daughter’s cot and to be able to concentrate on her, knowing that we had all our practical needs met. Staying at Eckersley House was better than staying in a hotel because we could cook for ourselves and wash ours and Gracie’s clothes. The house had wheelchair access to the rooms, there was a bathroom John could use and even the kitchen had been adapted. Disabled people are still often not considered when facilities and services for parents are planned, so it was so reassuring and affirming to us as a family to find that our needs had been catered for. John was able to be a father and be there for his daughter, as he wished, and he was also able to support me. Also, we were staying next to families in similar situations to ourselves and there were opportunities for us to talk about our children which really helped us get through this emotionally difficult time. It is hard enough to have a child who is ill and be a good parent and help to get them through their illness. You simply do not need the extra burden of debt at a time like this. It is vital that you are able to stay together as a family, with as few hassles as possible, so you can support each other through your child’s illness. Eckersley House just made such an immeasurable difference to us. Sarah Dever, Gracie’s mum Pic ref: Dever family.jpg Pic caption: (L-R) Gracie, John, Fionnna, Sarah Dever.

Our grandson's story

I am an ordinary gran like millions of others, but my grandson has a chronic illness which requires very specialised treatment at The Great North Children’s Hospital in Newcastle upon Tyne. My family live in Worcestershire, over 250 miles from Newcastle, so when George requires treatment we cannot just pop back home every evening. This is why Crawford House and The Sick Children’s Trust have become so important to myself and my family. They enable us to stay together as a family to support my grandson and his mother in Newcastle on the hospital site when George needs treatment. My story started when my grandson George was born, a beautiful baby boy, but before he was four weeks old he had been in two local hospitals, diagnosed with Severe Combined Immune Deficiency (SCID), and transferred by ambulance all the way from Birmingham Children’s Hospital to Newcastle General Hospital for specialised treatment. George required a bone Marrow transplant, so I took compassionate leave from work and travelled to Newcastle to support my daughter Vic, George and our 18 month old granddaughter Addie, George’s big sister. It took six months of treatment at the hospital before George was well enough to return home. That was when my relationship with Crawford House and The Sick Children’s Trust started. George’s condition is very complex, requiring regular visits to see his consultant, and many extended hospital stays as an inpatient. These have to take place at The Great North Children’s Hospital in Newcastle. As a mother with a toddler and a very ill baby, my daughter realised how important it was for her to keep the family together as a unit during George’s hospital treatment, and without the help of Crawford House this would not have been possible. Now when George needs treatment we are so lucky to have the support of Crawford House. We stay there as a family; it becomes our home for weeks at a time. It is far, far, more than just a place to stay which is close to the hospital. The staff who run it are wonderful; they have become our friends, and the support they offer when we stay is invaluable. We cannot speak highly enough of Gail and all her team at Crawford House. When we are miles from home without the support system of extended family and friends they step in, and always go the extra mile to help. Without Crawford House our family would be separated for long periods. It enables Addie to stay with her Mom during George’s treatment, and allows me to support them all. After a gruelling car journey of 5 hours on the motorways with George who, let’s remember, is feeling ill and needs treatment; Addie, an under-five year old, a stressed mother who is very worried about her son, and a tired and harassed gran, we arrive at Crawford House. As we put the key in the door there is an inaudible sigh of relief. We are safe, it is our ‘Home from Home’. I cannot stress strongly enough how knowing we are able to stay in Crawford House helps us through the very difficult times. After long worrying days with George in hospital wards it is such a relief having a secure and familiar place to return to with friendly, helpful faces. Somewhere we can eat, sleep, play, relax and try to live as much of a normal family life as we can, before returning once again to the hospital routine. My story of George, Gran and Crawford House is still being told….George’s condition is a long term one. We will be continuing to need the support of Crawford House for many years to come. So all I can say is a big “thank you” to The Sick Children’s Trust and Crawford House. The Sick Children’s Trust are a wonderful charity who help so many families through the most difficult times. If my story makes you realise how important Crawford House is in enabling families to stay together when a child is very ill in hospital, please dig deep and support them. Deborah Ellis, George’s grandma.

They say baby number two always comes quicker...

Rafferty Gunnar Binns was born on 27 February 2012. They say baby number two always comes quicker, well Rafferty was delivered by a paramedic on the bathroom floor! Not quite the delivery we had planned nor the long stressful birth I had anticipated. The next two days we were all at home; Rafferty didn’t seem to feed well and seemed very quiet and content. It became a gradual worry especially as we noticed a few shakes followed by a distant stare and then hiccups, initially we took this as wind but we both became increasingly worried. On the 1 March, my wife, Nina, was on the phone voicing our concerns to a midwife and I was holding Rafferty in my arms when his eyes rolled back into his head, his face went bright red and his body crunched nearly in half. In that split second I thought he was dead. Rafferty was rushed to our local A&E at Southend University Hospital and onto the paediatric intensive care unit where over the next week he would continue to have these violent seizures. Eventually our local hospital felt they were not controlling the situation well enough and it was agreed that he should be moved nearer to the expert neurologists in London. Rafferty was transferred by neonatal ambulance to The Royal London Children’s Hospital in Whitechapel on 9 March. When we arrived in the hospital the nurses in the Paediatric Critical Care Unit were quick to advise us there was a charity called The Sick Children's Trust who may be able to provide a room for the night. We were incredibly grateful for this night's accommodation; little did we know at that time that it would really become our home for the next few months. Arriving at Stevenson House we were blown away by what a fantastic place it was, the staff were welcoming and caring, the rooms and facilities far beyond what we expected. We were able to be at Rafferty's bedside from the early hours to late at night and it gave us much needed rest knowing that we were only minutes away. Dealing with a sick baby was terrible enough but we also had Rafferty's older brother, two year old Nathaniel at home, who was very confused as to why his brother was no longer at home and why he was spending so much time with his grandparents. Having the room at Stevenson House meant that Nathaniel could stay with us all week and we could each alternate our time between both boys. Rafferty's condition did slowly decline, but he was no longer required to stay in Critical Care and was transferred to a room in children's ward 7e. During this time we could now spend all days together as a family again from the morning until late night knowing that we were in rush or panic to have to travel all the way home. On the rare occasions we were all apart even having the internet connection in the house meant that we could Skype - little things that really helped us get by. Nathaniel grew very fond of Stevenson House, he made lots of friends with other children of a similar age and enjoyed playing for hours with the trains and building blocks. He also enjoyed watching the vast selection of kids movies, a few of which we've now had to go and buy ourselves! The kitchen in Stevenson House was fantastic; it has enough room for several families to manoeuvre and enabled us to cook some proper food instead of living off sandwiches. After undergoing many ECG, CT and MRI scans, multiple lumbar punctures and seemingly endless blood tests Rafferty was diagnosed with Early Infantile Epileptic Encephalopathy, also known as Ohtahara Syndrome. By the end of March, he was having seizures every 30-40 minutes, 24 hours a day which increased to about 60 seizures a day by 5 April. Most seizures took him four minutes or so to breath properly afterwards By May they were considering sending us home to spend as much time together as possible but on the 17 May, Rafferty went into status epilepticus (a non-stop seizure) and we were told he wouldn't survive the night. Although he did make it through that night, (his seizure lasted over eight hours) three days later he went back into status and this time the medication that saved him previously had no effect. The hospital arranged for a transfer to a children’s hospice for end of life care so we could spend his last few hours together in a better environment. The next morning Nina travelled with Rafferty whilst I packed and tidied up our Stevenson House room. In total we spent an incredible 75 nights at Stevenson House. We will forever be indebted to the SCT for making a difficult time that little bit easier and allowing us to spend as much time as possible together as a family during a very uncertain time. Amazingly Rafferty never gave up and two weeks later was discharged from the hospice. 100 days after he first left in an ambulance he had finally made it home. The Sick Children’s Trust strives to be a 'Home from Home' and I can’t sum it up than the fact that two months on Nathaniel keep asking to go back to 'our London house'. Jon Binns, Rafferty’s dad

Treetop House really was a ‘Home from Home’.

We first heard about The Sick Children’s Trust when our son Kian was born in January 2012. A paediatrician on the ward at Grimsby Maternity Hospital noticed that Kian had some signs suggesting he was born with Down Syndrome. As part of this condition he had also developed Duodenal Atresia, a condition in which the first part of the small bowel (the duodenum) has not developed properly and cannot allow the passage of stomach contents. The doctors told us that it presents itself in about 8% of babies born with Down Syndrome and would require surgery as soon as possible. The day of the birth we were moved to Sheffield Children’s Hospital for Kian to have his surgery. When we arrived at the hospital one of the nurses on the ward told us about The Sick Children’s Trust’s Treetop House and how we could stay there during this time. The charity offers free accommodation in their ‘Homes from Home’ for parents of sick children. From a logistical point of view, staying in Treetop House saved us countless hours travelling back and forth from Market Rasen which was nearly an hour and a half away by car. This was especially important for my wife, Kate, who having only just given birth, was exhausted herself. I can’t imagine how we would have coped if we hadn’t been able to stay close by. Treetop House really was a ‘Home from Home’. There are phones in the room in case the ward needed to call us during the night, which gave us great comfort. Also being in such close proximity with other parents going through similar situations we all shared a sense of empathy with each other. For us it was just having that private space away from the ward where we could recharge our batteries and get some head space. However, by far the biggest benefit of staying in Treetop House was so that we could be near our newborn son who needed the emotional support of his loving parents. It was an emotionally difficult and tiring time but having the comfort blanket of a room at the house meant we could focus our attention on helping Kian’s recovery and be there to spend as much time as possible with our son. Our five year old daughter Sarita stayed for a night too. It was quite an adventure for her in her sleeping bag on the floor. It was great for her to be able to see where mum, dad and her new baby brother were for all those nights and helped her get a better perspective on what was happening and why we weren’t at home with her. She was very resilient to the unexpected shift in her life and we are so proud of the way she handled everything. Our first stay at Treetop House was for four weeks but then Kian unfortunately and unusually had to have a second operation to treat the same condition returning and we found ourselves back at the house again in March for a further three weeks. The staff at Treetop House, Sheffield Children’s Hospital and Grimsby Hospital were quite superb during this time and helped aid his recovery once again. Despite Kian being very poorly when he was admitted the second time, he is now back at home doing all the things a three month old should be doing and we are looking forward to the future together as a family. We would like to thank all NHS staff who treated and cared for Kian. We owe them all an enormous debt of gratitude. Also the staff and supporters of the Sick Children’s Trust who looked after Kate and myself. We would also like to thank family, friends and all staff at Cottingham Pharmacy and Clee Medical Centre for their huge support when we really needed them. Mike Cottingham, Kian’s Dad.

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

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

Our 'Home from Home' Rainbow House

Rainbow House in London became our ‘Home from Home’ for 40 days last October when our, then seven and a half month old son, Emanuele, had to have two operations at Great Ormond Street Hospital (GOSH).

Emanuele was born in our home country of Italy on February 23 2011 with an oesophagus atresia – a congenital medical condition which affects the alimentary tract, causing the oesophagus to end in a blind-ended pouch rather than connecting normally to the stomach. The doctor told us that only one baby in every 3000 births is born with this and would need to have surgery to try and rectify the problems.

He was operated first in Milan, Italy in June but unfortunately this wasn’t successful and to add more worry to our already concerned minds he then suffered from vocal chords palsy and in August 2011 it became clear he wasn’t able to breathe on his own anymore.

He just appeared to be getting worse and worse so after a long period in the intensive care unit in Italy, the doctors decided to move him to GOSH in London. Whilst there he underwent a gastric transposition to join his stomach directly with the upper end of the oesophagus and a tracheostomy (a tube in his neck) to allow him to breathe below the vocal chords.

During this time, my family and I stayed at Rainbow House, The Sick Children’s Trust’s free accommodation that supports families of sick children whilst they are being treated in hospital.

Just being at the house helped us so much. Not living in the UK we were unfamiliar with the city of London but as we were so close to the hospital we haven’t had to negotiate the transport systems to travel across town to visit Emanuele; it’s been so easy for us to reach him anytime of the day. Both my husband and I believe that even though he was still tiny, he would feel that we were both there alongside his bedside when we could be, supporting and caring for him, and it would help boost his recovery.

Furthermore, for us as a couple, being in the house meant we had the opportunity to get to know other families and to share with them time and emotions. We used to have dinner all together after a tough day at GOSH: every one cooked and shared food. It was a nice time to rest and relax a little and it was been a big support to share worries, hopes and some moment away from the wards.

As a mum of two other children who were just nine and five years old also, being in the house was a god send. When we spoke to Sandra, the House Manager, about having our two other children come and stay with us, she was so kind and even moved us into a bigger room with a spare bed. They were so desperate to come over and see their little brother and after many months apart staying with their grandfather to spend a week together as a family was very important – it gives you such a boost emotionally to have your entire family around you during tough times.

When our children did come and visit, they came with my father-in-law. We had the chance to spend some time together in Rainbow House and it helped very much because it was like staying at home, eating, playing, watching TV – just the normal things families do which you sometimes take for granted.

We returned to Italy in mid November and Emanuele is getting better and better every day. He is still fed by a jejunostomy which is a little tube in his intestine and breathes through a tracheostomy but he’s improving and recovering very fast. We are supposed to get back in GOSH in four months for his first check up and it’s reassuring to know that if we have to stay over we can once again turn to The Sick Children’s Trust to help support us.

Elisa Rossi, Emanuele’s mum.