When our son Dylan was diagnosed with an infection of the bloodstream we were devestated...

In September 2011 our son Dylan was taken to Sheffield Children’s Hospital. He was diagnosed with an infection of the bloodstream, Streptococcal A septicemia. With Dylan being only four years old at the time of diagnosis, we were devastated. We spent all our time by his bedside and didn’t want to leave, we could think of nothing else but his recovery, we didn’t eat or sleep the whole time Dylan was in the intensive care unit. We are from Chesterfield so we wouldn’t have been able to travel the distance everyday. He remained in the intensive care unit for 11 days. When Dylan began to recover, we were able to leave his bedside and were informed about The Sick Children’s Trust and the accommodation that they provide. We immediately put our names down and were offered a room at Treetop House. It was great, not only could we stay close to Dylan but our daughter Ellie Mae, only aged two at the time, could also stay with us. Dylan and Ellie are really close, so it meant a lot that we could all stay together and be close to Dylan. With the accommodation being situated on the top floor of the hospital, we could shower, sleep and eat proper meals again. We also had the comfort of knowing that while we were away from the ward, we had a direct line to Dylan’s bedside as well as being only one lift ride away from him. The accommodation The Sick Children’s Trust provided was incredibly helpful. It was a weight off our minds in practical terms as we knew that we wouldn’t have been able to travel home to Chesterfield everyday. It was also really supportive emotionally as it was good to talk to other parents and families who were going through a similar journey as us. Also, the staff at Treetop House were amazing, they were so caring and were always there as a shoulder to cry on when we needed them. We cannot thank The Sick Children’s Trust enough for all they have done for us. Dylan has now recovered really well and we are so pleased. He is enjoying and doing well at school and also has become a keen swimmer. He is so happy and is always smiling. As much as we would like to forget Dylan’s hospital stay and the time we spent in Sheffield Children’s Hospital, we will never forget and will always appreciate the accommodation The Sick Children’s Trust provides. Colleen Beer, Dylan’s Mum

Lola was born on 7 July 2012 and it was the happiest day of my life...

We were lucky enough to stay in The Sick Children’s Trust’s Eckersley House for four weeks last July when our daughter, Lola, was born with Gastroschisis – a condition which affects 1 in 5000 unborn babies. Lola was born on 7 July 2012 and it was the happiest day of my life, but that happiness soon turned to panic when we were told by the doctors that because of her condition and her bowels being on the outside of her body she would require urgent care – she was booked in to undergo surgery the next day to try and repair her bowels. Lola was our primary concern but at that point we also had to face the issue of where we could stay. Our home was in Huddersfield and neither myself nor my partner, Michael, wanted to leave her side. That was when one of the midwives at Leeds General Infirmary told me about The Sick Children’s Trust’s ‘Home from Home’ Eckersley House. She kindly spoke to the house manager, Jane, and arranged everything. Having this respite just across from the hospital helped Lola and I to bond when she was born. As a first time mum I was worried that we might not be able to establish a strong relationship, but thanks to the close location of Eckersley House I could be there with Lola all the time. I genuinely believe that having Michael and I around also helped her recovery. The doctors had told me Lola would have to stay in 6-12 weeks but amazingly she was allowed home after just 4 weeks. The Sick Children’s Trust helped me more than words can say. I was so scared that I wouldn’t have money to travel every day and that I might miss the beginning of her life. But because of this amazing charity I could go and see her whenever I liked, which put my mind at rest. Two days before Lola was discharged she was allowed out of the hospital for the day and I took her to Eckersley House. All we did was sit down and relax, and for the first time we felt like a proper family. All the staff there were so helpful and I can’t thank them enough for allowing me to be with my daughter. Paige Wood, Lola’s mum.

My story begins at the end of May 2012...

My story begins at the end of May 2012 when my daughter Victoria complained about a pain in her arm. I looked at her arm to discover a lump at the top just below her shoulder and immediately packed her off to accident and emergency in Scarborough. We waited for what seemed like ages to be seen by a doctor who ordered an x-ray. Vicky had the x-ray done and we once again waited. At the time I didn’t think too much other than that she had probably injured herself somehow. The doctor called us in and said he was a bit concerned and that we would have to see a specialist, but in another area and some distance away from home. One week later we got a phone call from Birmingham Royal Orthopaedic Hospital with an appointment early the following week. They also stated she would have to have a biopsy done. Alarm bells were now starting to ring and I remember saying to my partner, Janet, that I thought it was a tumour. We packed ourselves off to the hospital at Birmingham and Vicky had her biopsy done. I was okay until on the second day the Macmillan nurse visited us and more or less confirmed my worst fears, that they were almost 100% positive that my daughter had bone cancer. I went through so many emotions; fear, anger, sadness… I even began blaming myself, but I was told this was quite normal in these circumstances. The results returned and did in fact confirm she had osteosarcoma (bone cancer). The appointment for Leeds General Infirmary arrived very fast, and we attended to be told that my daughter would need a very long course of chemotherapy and an operation back at Birmingham to remove the tumour. My first thought was how were we going to manage this with living 60+ miles away from the hospital, since we could not afford to travel back and forth. Then I was told about Eckersley House which was run by The Sick Children’s Trust, and how they provided a ‘Home from Home’ for parents like me. When we arrived at the hospital I enquired about Eckersley House and was shown where the accommodation was. I rang the doorbell and was immediately greeted by a member of staff who had the most wonderful smile on her face and immediately made me feel at home. She said the house was full, but if a room became available she would get in touch with the ward. A few hours later I got a message to return to the house as a room had become available. I was welcomed and shown around the house, which is truly a ‘Home from Home’ and has everything you could ever wish for. We are still going through the treatment six months later and I am still staying at Eckersley House. So this is my story; similar to many of the other families that stay here. I have met some wonderful families during my stay and also some wonderful staff who continue to put up with my sad days as well as my good days and are always there to help me through bad times. I thank the charity from the bottom of my heart. Without their help and support my family and I would be totally lost. The accommodation is a godsend to us; it means my partner can stay and I don’t have to go through this on my own. The staff are fantastic, always there for me if I need a shoulder to cry on and without them I would not find this distressing journey quite as bearable. They take a bit of the worry away because I know I can be close to my daughter if she needs me. Steven Waters, Vicky’s dad.

Our son's fight for his life...

In 2008, if it wasn’t for The Sick Children’s Trust’s and their ‘Home from Home’ Eckersley House, we wouldn’t have been able to stay with our son throughout his fight for life. Robbie, our little miracle, was born more than three months early, weighing just 2lbs and 7ozs, very suddenly at home in our bathroom. We called the ambulance service who arrived very quickly and took Robbie and me to Scarborough Hospital. My very shocked husband, Anthony, met us at the hospital and once Robbie had been stabilised and put on a life support machine we were rushed to St James’ Hospital in Leeds. This is where I was introduced to The Sick Children’s Trust’s Eckersley House who at this time had a ‘Home from Home’ there which provided free accommodation to families of sick children. The house has since been relocated to provide support to families of children from the Leeds General Infirmary The staff at the house were fantastic and the fact that they could offer us a room on the hospital site was invaluable and gave us the ability to stay with our very poorly little boy. After a three and a half month stay in hospital with many ups and downs including a nerve wrecking surgical procedure, Robbie finally came home, still weighing less than 5lbs. As a family we will always be indebted to all the people and services who helped get our little boy where he is today. Robbie is a happy, healthy four year old who lights up our lives every minute of every day. The Sick Children’s Trust played a massive part in our story, allowing us to be close to Robbie and provide support and comfort at both him, and each other at a critical time. Denise, Robbie’s mum

Only 1 in 3,500 babies our born with our daughter's illness...

Our daughter Lily was born in August with Tracheo Oesophageal Fistula and Oesophageal Atresia - a condition which is rare in the UK with only 1 in 3,500 babies born with it. The condition meant her oesophagus joined her windpipe instead of going to her stomach. Lily was rushed from Colchester hospital to the Rosie hospital immediately after she was born as she needed emergency surgery. Lily’s operation was a double fistula which we were told was quite rare, so we were very nervous about the outcome, but the neonatal surgical team managed to remove the fistulas from the trachea and join the two ends of the oesophagus. The result was positive but meant she could only feed through a tube through her nose into her stomach. On top of this her condition means her windpipe isn’t strong so it keeps collapsing and she finds it difficult or is unable to breathe at times. When we arrived at the Rosie hospital we initially stayed in hospital parental accommodation but this wasn’t ideal and we were relieved when we were told about The Sick Children’s Trust, a charity that provides free accommodation to the parents of sick children whilst they are being treated in hospital. We stayed at its Acorn House for two weeks from the 28 August. We were then transferred back to Colchester hospital for a month before returning back to Cambridge where we stayed once more with The Sick Children’s Trust. This time we were able to stay at their new ‘Home from Home’ Chestnut House, which caters specifically for parents such as us who have a very sick baby. We stayed at the house from the 1 to the 9 October and it was a godsend for us. It’s an incredibly stressful experience to have a baby in hospital. To then have the added stress of being away from home was very difficult. As a new mother you are continually told to look after yourself, eat well and get sleep, but this is practically impossible living in a hospital. Being given the room at The Sick Children’s Trust’s Chestnut House for that week meant we had the facilities to cook a proper meal and have a comfortable bed to sleep in whilst still being only minutes away from the neonatal intensive care unit – this was a massive relief and eased some of the anxiety we were feeling. Having the opportunity to speak to other parents in a similar situation sometimes was a help too, but we also had the option of just locking ourselves in our room for some peace and quiet at the end of a difficult day. I couldn’t bear being away from Lily but at the same time it was important for us to step out of her hospital room and get some rest time away from the NICU wards. We have since been back and forth between Colchester and Cambridge numerous times. We were finally discharged from Colchester hospital on 6 November so our dream came true and Lily has been at home with us for a couple of weeks now. We will have to go back to Addenbrooke’s Hospital every month for the foreseeable future for Lily to have her dilatation. At least it will only be for a few days and Lily can be at home with us in between. We know now about the wonderful charity, The Sick Children’s Trust, and we know that should we need to call on them again during these visits we can. Jessica Moore, Lily’s mum

Acorn House was like a haven for us.

On 6 September of this year, our family was very unfortunate to be involved in a serious car accident caused by a foreign lorry driver driving on the wrong side of the road. Our 6 year old daughter Ella was in the car at the time and thankfully suffered just minor cuts and bruises, but our youngest daughter Maisie who is 15 months old was also in the vehicle and sustained serious injuries, including several fractures to her skull causing damage to her brain and several fractures to her left leg. We were initially transferred to The Royal London Hospital from the scene of the accident, but it was Addenbrooke’s Hospital in Cambridge that was to become our home for the following month. It was whilst Maisie was being cared for in the Paediatric Intensive Care Unit at Addenbrooke’s Hospital that we were made aware of The Sick Children's Trust and the facilities they provide to families who find themselves in similar situations to ourselves. Within a few hours of Maisie being transferred into the Intensive Care Unit (ICU), the Ward Clerk had arranged for us to be introduced to Joy the House Manager of Acorn House. Joy confirmed that she was in a position to offer us a room at Acorn House for the duration of Maisie's stay in the ICU, which was such a relief for us knowing that we could stay so close to our daughter as home for us is Colchester, which is at least an hour's drive from the hospital. Acorn House was like a haven for us. We could not believe that we were able to stay in such a beautiful house and use all the facilities and be so close to Maisie. We were able to call from our room directly to the phone at Maisie's bedside at any time of day or night, which we did frequently, especially for reassurance that Maisie was ok if we had had to leave her side for any reason. We were able to have our other daughters Melissa, aged nine and Ella, aged six come and stay with us whenever they liked. They were able to play in the house itself and the garden. We also had several family meals together at Acorn House, including other family members and friends who had come to visit Maisie. This was so important to us as it was very hard to be apart from our other daughters and caused a real strain on us as a family, but to be able to be together whenever we could and enjoy a sense of 'normal life' playing and eating and spending family time in an environment which felt so similar to home was very comforting. It really did make our time at the Hospital so much more bearable and The Sick Children’s Trust’s intention of creating a 'Home from Home' environment is in our view exactly what it is. Our time at Acorn House was also made easier by the wonderful hospitality we received not only from Joy the House Manger, but Julie and Jane who also work at Acorn House. At a very difficult time for our family they were there for us with complete understanding and compassion, for which we were very grateful. Whilst staying at the house we also had the opportunity to meet other families staying there. Although our circumstances were not necessarily the same, we had a common bond and spending time with them and sharing our stories and feelings certainly had a positive impact on our experience at the House. We spent the best part of a month at Addenbrooke’s Hospital with Maisie, but we are now home. She is regaining her skills and progressing well and we are confident that in time she will make a full recovery. We were extremely pleased that just before Maisie was discharged from hospital we were able to take her to play at Acorn House and introduce her to the other families that we had met. This really meant a lot to us as it had been our home for the duration of Maisie's stay in hospital and we wanted to share it with her. Obviously this has been a very traumatic experience for our family and we have been through a very difficult time, but in relation to Acorn House itself and the families and staff we have met, we have very fond memories and we really do have The Sick Children's Trust to thank for that, for which we are extremely grateful. Nicola Moon, Maisie’s mum

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.