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.