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