My daughter Rachel is the only person in the UK, as far as I know, to have a papillary tumour of the pineal gland. She is one of only about 40 people in the world (the others are mainly from Asia) believed to have this type of brain tumour. For Rachel to have recovered as she has done from this extremely rare condition is nothing short of a miracle, and we put a lot of that down to the fact that I was able to be with her 24 hours a day in the hospital, thanks to The Sick Children’s Trust’s Home from Home accommodation. Rachel had been a perfectly fit, normal, healthy 12-year-old girl when on 21 September 2011 she was sent home from school with a severe headache. When I went to get her she was walking like a drunk. We went straight to the doctor who sent us to see a neurologist at the local hospital in Bramley, South Yorkshire. She had a C.T. scan and that’s when we found out she had a massive brain tumour. Rachel was transferred to Sheffield Children’s Hospital and had emergency surgery at 8am the following morning. It was a nightmare. I felt like someone had pulled the rug out from under me. Rachel had only been back at school two weeks after the summer holidays. At the end of August we had been on a family narrow boat holiday with some friends and then Rachel went on to Suffolk on a camping trip. To go from that, and going back to school, to being at death’s door was horrendous. The whole family was devastated – Rachel also has a twin brother Jordan. For the first couple of nights I slept on a chair by her bed. I had heard from someone on the ward that the charity, The Sick Children’s Trust, offered free accommodation in the hospital to the families of sick children. There was a waiting list to stay at Treetop House, but a few days later, on 26 September I was offered a room. I was very lucky I didn’t have to wait too long. I stayed until Rachel was discharged two months later on 28 November. Unfortunately, I wasn’t so lucky when she was re-admitted in December for a week of radiotherapy treatment - there was no room available and I only had a chair by her bed. I didn’t go home. It was really hard, and I barely slept the whole time, but it reminded me of how much I had appreciated being at Treetop House during her previous stay. Until you are in that position you can’t believe how much the little things mean to you. To get up in the morning and have a shower is something most of us do every day, so when you can’t do that it is awful. In Treetop House you have got all those facilities that you take for granted at home. I could shower and wash my clothes, I could pop up and make a cup of tea if I wanted to, and make something nice to eat in the kitchen rather than rely on hospital food. It was also wonderful to know there was a place where I could retreat to for half-an-hour or so when Rachel was asleep. And it gave me peace of mind knowing the nurses could call me in my room or in the lounge and I could be back on the ward in a couple of minutes. I live in Bramley, about 20 miles from the hospital, and I use public transport, so it could have taken me about an hour and a half to get back from home. I believe it also helped Rachel’s recovery immensely, both psychologically and practically, to know that I was always in the hospital. If she needed the bathroom or help to eat I could do that. After one of the surgeries she was left paralysed. She couldn’t sit up unaided and couldn’t get her hand to her mouth. For me to be fully involved in her care, and to ask questions it was much easier being on site with her. I have absolutely no idea how I would have coped if Treetop House had not been there. In the 68 days of her first hospital stay I went home twice. In those two months, Rachel endured eight neurosurgery operations. She developed hydrocephalus, due to the tumour preventing water draining from her brain, and also suffered headaches, nausea and vomiting. It was debilitating for her, but she was so brave. She never complained and was an absolute treasure. Mum and dad would come and wait with me in Treetop House when Rachel was in surgery – one operation lasted nearly 13 hours. It was good to get away from the ward and the waiting room and go somewhere private where we could cry together as a family – we never knew if she was coming back or not. I had a couple of nights when the medical staff said, “you had better not go to sleep upstairs tonight”, which puts into context how ill she was. My son Jordan stayed with me for a couple of nights. It was so nice for us to be together as a family. He found it hard to be at the hospital, to see his sister the way she was, so it was good for him to be able to go to my room. I could get him something to eat and we could sit and watch television. Jordan stayed with family friends while Rachel was in hospital, so that he could continue to go to school, and they would bring him up to see us during the week. As far as we are aware, there is not another person in the UK who has Rachel’s type of brain tumour. There is nobody I can talk to who can say, “I have had that” or, “we have got through that” or, “we didn’t get through that”. I have joined a couple of forums online but nobody has quite the same thing. But it really helped staying in Treetop House, because even though the other parents had children with very different medical issues, they were going through the same emotions and feelings that I was going through. It was great to sit and chat with them, often over a meal. There were two people in particular with whom I have kept in touch and we have become friends. Treetop House manager Ann and her deputies Nichola and Rachel were also really helpful and supportive. It was so nice to be able to go to them for a chat. Rachel was allowed to visit Treetop House in a wheelchair in the last couple of weeks she was there. She loved my room and it was great for her to get away from the ward. She is back at home now and has finished her treatment but she needs an MRI scan every three months. Surgeons removed 95 per cent of the tumour and she has had intensive head and spinal radiotherapy to kill off the rest. It would appear on the initial post treatment scan that the tumour has all gone, which is very encouraging, but they won’t say for sure until a few more scans down the road. We are now watching and waiting to see how much she will improve. The tumour caused damage and the radiotherapy caused further damage, which has raised new problems. But Rachel is amazing. She has gone back to school for two afternoons a week and we are hoping to increase that. We have had so much support from Rachel’s school - she is in Year 8 at Wickersley School near Rotherham – which has been fundraising for us. We have a plan that once she has finished her treatment we want a nice holiday. Rachel would really like to go to Australia – how feasible that will be I have no idea. It won’t be until at least next year as she is not allowed to fly yet. We also want to raise money for charities, including The Sick Children’s Trust. Her school friend Lydia handmade 200 Christmas cards, which we sold through local coffee shops, and raised £100 for the charity. They both handed over the money to the staff at Treetop House, which was brilliant. I am a paramedic but I haven’t been to work since September. My work colleagues have also been fundraising for The Sick Children’s Trust. The charity is amazing and it was a privilege for me and my family to have stayed in one of their Homes from Home. Beverley Hirst, Rachel’s mum

It quickly became apparent that she was going to require urgent treatment...

Our daughter Savannah was born in our local hospital James Cook Hospital in Middlesbrough with a liver disease called biliary atresia on 7 September 2010. This is a blockage in the tubes that carry bile from the liver to the gallbladder. It quickly became apparent that she was going to require urgent treatment and on the 21 October at just six weeks old she was transferred to Leeds General Infirmary where she had to endure a long operation called Kasai Procedure to surgically bypass her blocked liver ducts to prevent liver damage. The girl’s father, Dale, myself moved down from our home in Middlesbrough to Leeds. It was here that we had the support of The Sick Children’s Trust’s Eckersley House which became our ‘Home from Home’ for the next 16 of days. The recovery time for this was six weeks, during which time she was on special milk and different medicines throughout the day as well as regular check ups with the doctors. During our time in the house Savannah has had to have lots of different tests and scans and four blood transfusions whilst the doctors decided on the best course of treatment for her. It was wonderful to have a place to call our home throughout this time. Eckersley House provided a sanctuary for me and the rest of my family and meant that we could focus all our attention on Savannah and willing her to get better. Our home in Middlesbrough is over two hours away so if we’d have to have travelled in every day it would have put a huge strain on us both financially and emotionally. After Savannah had recovered enough to come back home we headed back to Middlesbrough. But just as we thought we were beginning to see a light at the end of our tunnel, Savannah then got cholangitis every couple of weeks, an infection in the liver which requires urgent treatment with antibiotics, and we were back in and out of James Cook hospital. This was a situation we became very familiar with over the next two years. We moved to Scotland in August 2011 and continued Savannah’s treatment at Yorkhill Children’s Hospital there. We really didn’t think the situation could get any worse but then in August 2012 we noticed that Savannah had a lot of blood in her stools which we later found out was ‘portal hypertension’ – high blood pressure in the portal veins which is the main vein carrying blood from the gut to the liver. We were terrified. The doctors told us that the portal hypertension caused veins like varicose veins to develop in the lining of the gullet, stomach or gut. These veins become fragile and bleed. Just the thought of our little girl suffering like this was overwhelming. The doctors initially tried to treat her at Yorkhill hospital but when she deteriorated decided we had to move her back to Leeds General Infirmary. In September 2012 we were told that Savannah would need a major liver operation to put a stent in at Leeds. Once again we called on the support of The Sick Children’s Trust, where we stayed for nearly a month from 7 September 2012. This time round though we had our four month old daughter Paris, also with us, so it was even more important for us to have the support of the charity and somewhere the whole family could stay. We were so nervous about the outcome of the operation as doctors told me they have never performed this operation to someone as young as Savannah but being in the familiar surroundings of Eckersley House and knowing we were literally just moments away across the road from her ward helped us no end. At the moment we don’t know the outcome of the stent operation. We are just hoping for the best. We have to go back to Leeds for the results in November but we know that ultimately Savannah will need a liver transplant and that is the reality of what we have to face but she is a brave little girl and we know we’ll get through it together. We would like to thank The Sick Children’s Trust and Eckersley House as if it wasn’t for them we wouldn’t have been able to be by Savannah’s side through all of this. Adelle Rennard, Savannah’s mum

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.

Scarlett and me

When my young daughter Scarlett was involved in a horrific train accident she had to be rushed to Sheffield Children’s Hospital to undergo emergency surgery. After thirteen hours of surgery Scarlett was moved to the intensive care unit to recover from the trauma. I felt completely overwhelmed, exhausted and terrified about the fragile state of my daughter. On top of this I also had to worry about where I was going to stay so that I could be close by to Scarlett.

Fortunately the nurses at the hospital told me about Treetop House, free accommodation only a lift ride from the ward, provided by The Sick Children’s Trust. It felt as if a weight had been lifted from my shoulders knowing that I could stay so close to Scarlett and have access to a warm, comfortable ‘Home from Home’ environment. Treetop House had everything I needed from a well equipped kitchen to quiet areas when I could go to have some time to myself when things got too difficult to bear in the intensive care unit.

When Scarlett’s injuries began to improve I was able to take her up to my room and show her where I was staying. I know it was a comfort to her to know that I was never far away. The staff were all incredibly supportive and even played with Scarlett when she came to visit which she clearly enjoyed. Another wonderful aspect of the house was the direct phone line between my room and Scarlett’s ward; it was reassuring to know that night or day I could be at her side in an instant.
I met a number of other families who were staying at Treetop House and although we all were going through very troubling times, we were united by our shared situation and formed very close bonds. The other families, alongside the always attentive staff, acted as a much needed web of support for which I am very thankful.

Scarlett is now improving dramatically and has started to walk unaided with her walking frame. Whilst Scarlett is getting better I know she will have many more operations in future and it is wonderful to know that Treetop House will always be there to support us. I am so grateful to The Sick Children’s Trust and only hope that more families can benefit from the wonderful service they provide.

By Sam, Scarlett’s Mum

Chelsey’s story

When my fifteen year old daughter Chelsey was rushed into hospital with chronic Crohn’s disease I felt completed distraught. After eight days at Lewisham Hospital, Chelsey’s condition was not improving and she had to be transferred to The Royal London Children’s Hospital in Whitechapel. My husband and I travelled through rush hour traffic every morning to visit Chelsey making the whole experience increasingly stressful and tiring. Alongside the frustrating and energy sapping commute, we found it heartbreaking when, every evening, we had to leave our daughter’s bedside knowing that we couldn’t be close to Chelsey at night.

Fortunately one of the nurses on Chelsey’s ward, perhaps noting our distress, recommended that we enquired if rooms were available at Stevenson House, free accommodation next door to The Royal London Hospital provided by The Sick Children’s Trust. I was unsure as to what to expect but welcomed the opportunity to stay close to my daughter. When I arrived at Stevenson House I was completely shocked; the house was both spacious and comfortable and boasted a large kitchen and communal area. I immediately felt at home and couldn’t have been more impressed by the management team whose friendly welcome and continual support throughout my stay improved my moral dramatically.

I was given a room with a double bed and a pull out single bed which allowed my husband and Callum, my seven year old son, to stay with me at Stevenson at the weekends. This provided the family not only with the chance to visit Chelsey but also quality family time and a sense of normality amidst the turmoil. Callum absolutely loved the house as he was able to play with the large selection of toys and the children of other families staying there. Speaking with other families was a really beneficial experience; we were all united by our unfortunate circumstance and raised each others spirits. Having this support structure and the close contact with my family was absolutely vital as Chelsey’s condition continually worsened. Her weight had plummeted to under six stone and she needed a potentially life saving operation to remove part of her small intestine.

To our relief the operation was successful and during her recovery Chelsey was able to visit Stevenson House herself to enjoy lunches and dinners with the family. She was so impressed with our ‘Home from Home’ and seemed glad that it was there that we had been staying during her difficult ordeal. Chelsey has now recovered well, has put on weight and is back at school like a normal fifteen year old. I honestly cannot thank The Sick Children’s Trust enough for the support that they gave our family during our darkest period and only hope that more families can take advantage of this wonderful charity during their time of need.

Sharon Bennett, Chelsey’s Mum

We are so grateful to Guilford Street House

In January 2011, at just four weeks old our daughter Kacey was diagnosed with severe bronchiolitis and admitted to University Hospital in North Staffordshire.

After a few days the doctors realised that she wasn’t recovering as they had hoped so they decided to take a CT scan. This showed her windpipe was so narrow it was the width of the tip of a ball point pen and one of her arteries was wrapped around the windpipe. All of this was causing her to struggle with her breathing – they said it was a miracle Kacey survived the first few weeks of her life with this condition going undetected.

She was immediately transferred to Great Ormond Street Hospital (GOSH) in London for an operation to correct this, where my partner Victoria and I joined her.

This was a long way from our home in Stoke on Trent and when we arrived there we were so disorientated, the last thing we thought about was finding somewhere to stay close to the hospital. Thankfully a nurse on Kacey’s ward told us about The Sick Children’s Trust and luckily when we called they had a room free.

We stayed at The Sick Children’s Trust’s ‘Home from Home’ at Guilford Street House for 18 days from March 14th to April 1st 2011.

At first our younger son Logan, who is just two years old, stayed with Victoria’s mum until we got settled in London, but after a week she couldn’t afford to take the time off work so Victoria got the train back up to Stoke and picked him up and brought him back to be with us.

We had been apprehensive about bringing him down to London but all our fears soon subsided when we saw the house. It was just lovely, really warm and welcoming, a true ‘Home from Home’.

Logan loved being at the house and playing in the playroom with all the other children in the house, as this gave him a real sense of normality. We also took him to the park across the way and also London Zoo for the day to try and de-stress us all and get back that sense of family we had before all of this happened.

We were so grateful he could stay with us as I know the hospital can’t accommodate siblings. We all wanted to try and remain together as a family as the only other option would have been for one of us to remain at home in Stoke on Trent, which would have been the very last thing we wanted to do.

Staying at the house was brilliant. We didn’t realise how expensive London was and if we had had to stay in a hotel and eat out every night we would have been living on an extremely tight budget. Being able to cook in the kitchen and wash our clothes in the house and not have to take them to a laundrette really helped us out financially.

Also, as neither of us drive we would have had to use public transport to get between the hospital and Stoke on Trent without the charity’s support. With Guilford Street being just around the corner this was a great help as we could just walk from our room and not incur daily travel costs.

Tina, the house manager, was also very helpful in making us familiar with our new home and surrounding areas, as were other families who were staying in the house. We made friends with another family from Stoke and it helped ease the stress to talk to them and share our similar circumstances.
Kacey is doing really well now and we have been at home more than three months. On our last trip to GOSH we were told we can now be treated at our local hospital for follow up appointments, so fingers crossed we won’t be needing support from The Sick Children’s Trust in the future. However strange it seems, we will always have fond memories of our time at the house, and think back positively on all the support we received and friends we made during our stay.

By Carl Lewis, Kacey’s dad

Eckersley House provided us with a sanctuary By Helen Meynell, Lewis’s mum

When our son Lewis was born in York Hospital in January 2011 he had to be transferred straight away to Leeds General Infirmary (LGI). He was suffering from Gastroschisis, a condition which meant his bowels and intestines were born on the outside of his body and he needed immediate attention.

We were made aware of his condition during an early scan but were still not fully prepared for what lay ahead. Whilst Lewis was transferred to the LGI me and my partner, Andrew, couldn’t follow him until the next day. When I arrived at the hospital I was placed back onto a ward as I still required additional post birth care but Andrew had to sleep on the floor on a mattress.

As you can imagine the situation was not ideal but thankfully because we had known that there was a possibility of us being transferred we had already researched our options and found The Sick Children’s Trust. Four days later both Andrew and I moved into Eckersley House.

On his initial night at the LGI, Lewis had his first operation which appeared to be a success but then six weeks later at a scan to check he had healed properly, the doctor found more blockages in his intestine and we were told he would need a second operation to rectify this. We had to wait six more weeks to see if Lewis had recovered and unfortunately once again, there was another blockage and he was taken back to intensive care.

During this time, Andrew and I remained at Eckersley House. I can’t tell you the relief we felt knowing that we were literally just across the road from him should he need us. We initially thought that we would be back home in Scarborough after two months but he wasn’t recovering as fast as we had hoped which meant we had to extend our stay.

We were missing our families as we were used to them being close by, so having them visit us at the house helped no end and they gave us reassurance as new parents that we were doing everything we could for Lewis. Mentally and emotionally it was wonderful to be around familiar people. We could bring them into the lounge and sit and have a cup of tea together and chat about what was happening, it was almost like being at home, especially when our parents came to stay.

After Lewis’s third operation, he was in intensive care for more than a week. He was slowly getting better but then he reacted adversely to a drug and his progress went rapidly down hill. He had to be put on a ventilator as he couldn’t breathe on his own.
I was getting really worried about him so took his grandpa over to see him who had been staying at the house with us and after that he perked up. I really do believe that having his family around and so close had a positive affect on his health.

Staying at the house for us has been great. We can get some sleep away from all the beeps and noises of the ward. When I was first in hospital the nurses were coming in and out all the time so I didn’t get much sleep. Staying at Eckersley House has helped to get my sleeping pattern into a better routine so I can wake up refreshed and focus all my energy on Lewis. He was taken away from me so quickly that all I had time for was a quick cuddle when he was first born, but being here I can spend all my time with him and we can bond, which as a first time mum is very important for me.

There is always a friendly environment in the house with other families. Everyone gets along and clubs together to support each other as we are all in the same situation with sick children. There was one family from our home town that I became quite good friends with and we shared the learning of Total Parenteral Nutrition together. This is a procedure that provides liquid nutrition through a catheter that is inserted into a vein and I needed to learn how to do this for Lewis. This gave me more confidence that when I will have to do it on my own when we go home, it will be okay.

The house manager Jane has also been a rock. She has become like a surrogate mum to me and taken me under her wing. She reassured me about Lewis and also showed real concern for our situation. I know I can talk to her about anything from finding a local store in Leeds, to more emotional topics such as coping with being a first time mum.

Lewis is now doing much better and is on solid food three times a day and only fed through a tube 14 hours a day. He is getting much stronger and will hopefully be ready to go home soon.

The day that changed our life.

What started as a routine check-up led to our son Dylan being hospitalised for 6 ½ months when he was just 14 months old. He suffers from a rare condition called Larsen syndrome in which his bones do not grow properly. He had to have a tracheostomy and a spell in intensive care, at Newcastle General Hospital. I stayed in the ward with him for the whole time. My husband David wasn’t able to stay but he visited frequently even though it took two buses each way.

Dylan, who is now seven years old, has been in and out of hospital ever since, and in May this year he had a seven hour operation to have the bones in his foot broken and realigned. A frame was attached to the bones in his foot with a screw which we have to turn to help realign the bones gradually. That operation was at Sheffield Children’s Hospital, and as its three hours away from where we live, we were delighted to be able to stay at Treetop House.

David and I wanted to spend as much time as possible with Dylan and it was amazing that The Sick Children’s Trust could provide us with a secure and comfortable place to stay just minutes from his bed. Where possible we tried to make sure Dylan was never alone, so one of us would be on the ward while the other was in Treetop House. At night I’d sleep on the ward, and then go back to Treetop House to shower and freshen up while David sat with Dylan.

Even though Dylan’s used to being in hospital, he still finds it frightening, especially before an operation, and so he needs us to be with him as much as possible. Having the direct phone to the hospital was especially reassuring. If Dylan wouldn’t settle or needed comforting it was fantastic knowing that we were on call and were never more than a couple of minutes away. I would say that having us so close to Dylan definitely helped him recover; he was home a week after a major operation.

The actual house was lovely, it didn’t feel like a hospital, it was so much cosier and friendlier. It also had cooking and laundry facilities so we were able to visit the local supermarket and stock up on food for the week. At mealtimes it was quick and easy to just pop something into the microwave and it saved us money on expensive hospital food. Having our own ‘Home from Home’ also meant that my family were able to visit Dylan from Newcastle, and I could prepare lunch for them. As Treetop House is situated within the hospital Dylan was also able to visit us - in fact he liked the house so much he didn’t want to go back to the ward! He liked the playroom which is equipped with toys as well as a television and computer.

The Sick Children’s Trust staff were very friendly and I really appreciated all the practical help they gave us. It was also good to have other parents in the house. Even though they had problems of their own, they were all supportive and I found it comforting to be with people who understood what we were going through. I struck up friendships with two parents at Treetop House and I am still in touch with them.

Dylan’s operations have been successful and he’s doing well but he will always have Larsen syndrome and face more stays in hospital. We have to visit Sheffield Children’s Hospital once a week at the moment - we stay in hotels the night before as the appointments tend to be at 7 in the morning.

It is so difficult for children when they go to hospital and Dylan has really benefited from having his family around him. I know that Treetop House can be full so I’m really grateful that we were able to stay. I can’t thank The Sick Children’s Trust enough for their support during this hard time.

Victoria Marshall, Dylan’s mum

Travis pulled through thanks to the support of The Sick Children's Trust

Our son Travis was born at 24 weeks old in our local hospital in Luton and Dunstable. A few weeks after the birth though it became apparent to the doctors that something wasn’t right and he was in severe pain in his stomach.

At only two and a half weeks old the doctors put him on medication to try and treat him but they soon realised that this wasn’t working as effectively as they had hoped, so he was transferred more than 30 miles away from our home in Stevenage to Addenbrooke’s Hospital in Cambridge.

I went with him in the ambulance whilst my partner Roger followed by car.
When we arrived at the ward, Travis was settled in and the doctor told us that they wanted to monitor him before making a decision on whether or not to proceed with the surgery.

Initially I was allowed to stay on the ward for a few days but I was told that if a child was brought in from further away than us or in a more critical condition we would be moved. Luckily we were able to stay for three days, so this answered the initial stress of the question of where we going to sleep that night.

After three nights we had to make the heart wrenching decision to leave Travis and go home. As we didn’t know about The Sick Children’s Trust and Acorn House we felt we had no option but to make the 60 mile round trip every day for the next 12 days. The stress of doing this was immense, but we had three other children to care for and consider.

In the middle of December the doctors told us that the medication still didn’t appear to be working, and one month after he was born the decision was made for Travis to undergo surgery.

The hospital found me accommodation for one night so that I could be there when Travis woke up but then we had to go back to the round trip to home every day for the next three months.

I can’t even begin to tell you the gut wrenching feeling of being torn between your newborn baby who you desperately want to be there for, and your younger children who wonder where mummy and daddy are going each day.

After his surgery Travis was moved to a ward where I was allowed to sleep by his side and it was here that we learned about The Sick Children’s Trust’s Acorn House. We decided to try for a room so that my partner could stay here and bring over our other children who were just 18, 14 and two. We were worried about the effect it would have on Warren, our two year old in particular, as he was so young.

Having to cope with a toddler in this type of situation was so stressful. Luckily with my eldest being 18, she looked after Holly during the week and then Holly and Danielle would come join us at Acorn House at the weekend, but Warren was different. I couldn’t explain to him what was going on and he didn’t like being on the wards and we didn’t really want to put him through that, and let him see his little brother in that environment.

Acorn House was a life saver for us. Warren loved spending time in the playroom and also in the garden. It was a relief to me to be able to cook him healthy meals here too, and at the weekend when the girls would visit we could all spend time together as a family.

Travis was too sick to come to the house at first and I was only allowed one hour breaks with him away from the ward, but even if it only meant spending 20 minutes in the house it was worth it. To have Warren engrossed in a DVD whilst I fed Travis gave me the sense of normality I was craving so badly.

I also used the rooms to express milk; private space was great. And the phones in the room meant that I could contact the ward to let them know that I was on my way over with food. The washing facilities were also a necessity for us. Travis’s condition meant that he had a short gut and couldn’t digest food properly so he used to leak out onto his clothes. Initially, one of the main reasons we had to drive back and forth from home each day was to do the washing but with the facilities at Acorn House it meant we didn’t have to worry about this and every precious moment could be spent with our children.

Travis is home now and exceeding all expectations. When you have a sick child, as well as all the family and emotional issues you go through, you don’t really think about the practical side of things such as the cooking and cleaning, not to mention finances. Having four children meant I needed space for my children and Acorn House made our life so much easier. I just wish we had known about it sooner.


Angela Hamilton, Travis’s mum

We finally got our happy ending.

As every pregnant woman does, I had a romantic vision of what becoming a mum would be like. I saw my husband and I leaving the hospital with a baby carrier and balloons with our newborn baby ready to start our new family life together. So, when I went into labour 10 weeks early in December 2010, I knew things would not happen the way I had hoped and life would never be the same again.

Emily was born on Christmas Eve 2010 weighing only 3lb 11oz. Within a few weeks of her birth we were told the most shocking news that any parent could imagine; Emily had a life-long illness, cystic fibrosis.

After moving between several different hospitals, Emily needed surgery and was transferred to the Royal Victoria Infirmary (RVI) in Newcastle, over 50 miles from our home in North Yorkshire. For the first week we travelled the stressful journey daily in all weathers just to spend a few hours with her, but the cost of petrol and my husband’s work pressures meant we couldn’t continue to do so.

Chatting with one of the nurses on the neonatal unit we were told of accommodation within the hospital grounds that had rooms for parents, free of charge, so we could be close to Emily. Everything was arranged for me to stay at the house so Mark could return to work. One afternoon I was taken over to Crawford House, a ‘Home from Home’ funded by The Sick Children’s Trust with a fully equipped communal kitchen, living room and a laundry.

At first I was so nervous, I was worried what the charity house would be like, I didn’t want to be alone whilst my daughter was so sick, would I be safe there on my own? I imagined it to be like student accommodation with sticky carpets, dark corridors and dirty bathrooms. These worries couldn’t have been further from the truth, the house was welcoming, big and airy and above all clean and safe.

The staff were so considerate and gave me a room where there were no families so I didn’t have to lay in bed at night listening to other peoples’ babies crying whilst I wished I had mine with me.

My room was freshly decorated and warm, and I felt safe as soon as I closed the door. The bathrooms were spotless and the shower was better than the one I had at home. The first night I met some of the other families staying there. I heard of sadness and fear as well as determination and strength. That night I cried not just for my own situation but also for the other families and their own sad stories.

Until that day I never knew Crawford House existed but in just 12 hours I saw how amazing this charity home was for so many people. The Sick Children’s Trust allowed me to be with my daughter whenever I wanted and for the first time I could be a mum for Emily and do simple, caring tasks like breastfeed her or just give her a cuddle. This was really important as I didn’t feel like I knew her yet.

Many nights when I couldn’t sleep I would walk over to the unit and sit and chat with her, something I couldn’t have done if I was 50 miles away. I finally started to get to know this strong minded little person and didn’t have to worry about anything but being there. With Crawford House having so many people in similar situations to mine, it was easy to make friends and everyone supported one another. They understood how hard it was and for the first time I met people who actually knew what I was going through which really helped; I didn’t feel alone anymore.

One wet, cold afternoon I returned to the house upset after a small setback with Emily and was greeted by one of the staff. She took me into the office and didn’t just offer me tea but a shoulder to cry on (literally). She held me so tight and gave me the warmth I so needed. The ladies took time to get to know me and went above and beyond their job description, offering practical and emotional help and support when I needed it most. Later that day I found a bar of chocolate left in my room by them to cheer me up; that one small gesture will never be forgotten, it meant so much to me.

On the weekends Mark, my husband would come to visit and we would stay together and spend hours sat around the table in Crawford House catching up and discussing Emily’s care. To sit and have a meal together when we had spent all week apart was wonderful. I was conscious of the fact I needed to keep myself in top shape because I was breastfeeding Emily so it was great to have a proper kitchen and not just a microwave to prepare food in. Canteen food is alright every now and then, if expensive, but in the house I could make home cooked meal, something I would never have had time to do if I was travelling up every day.

After a crazy week of medical talk it was nice for Mark and I to have the peace of Crawford House, it allowed us time to have a catch up without all the commotion of the hospital. I found it so stressful being in a hospital environment all day every day, remembering to wash your hands all the time and with people coming and going, so having some privacy was a tonic. Coming to terms with news is hard enough but when your immediate world never stops around you, it’s impossible to allow your head time to catch up and think. As a result I craved privacy and having space for Mark and I to just be together and talk through things gave us time to think about Emily and her ongoing care. I hated crying in public, the thought that I might be judged by people for being weak meant I spent hours putting on a ‘mask’. I often walked back to my room and just sat and stared at the walls, it was quiet and I could finally cry, not just for Emily and what she was going through but for me and what lays ahead for us all.

Looking to the future we are going to have to visit the cystic fibrosis team every six weeks and we have chosen to keep coming to Newcastle instead going to our local hospital in Yorkshire. The care here is above and beyond what we expected and this is also due in part to the warmth and support we received from The Sick Children’s Trust.

The cystic fibrosis is something we need to come to terms with and learn about but at the moment we have our brave, beautiful baby at home where she belongs and that is all I ever dreamt of. I will never be able to repay the charity for its unconditional kindness and I will always be grateful for the room they gave me when I needed it the most. You never know these charities exist until you need them and I want to let as many people as I can know that they need our help.

Kate, Emily’s mum