Our little miracle

When I was 20 weeks into my pregnancy, my unborn baby was diagnosed with multiple heart problems. I was told that I would have to be induced a week early and give birth at Leeds General Infirmary (LGI) to be closer to his specialist team rather than at my local hospital, York, near our home in Hemingbrough, Selby.

Vaughn was born 10 March 2010 with an interrupted aortic arch and a large hole in the heart. At just five days old he had his first open heart surgery. During this time, I stayed on the hospital ward and my husband and daughter would come and visit us.

After his first operation we were sent home as everything appeared to be okay, but then during his regular monthly heart scans it became clear that there were further complications. Vaughn was next diagnosed with sub-aortic stenosis. The valve in the main artery which carries blood out of the heart was too small and had a blockage; it also had only two flaps instead of the normal three flaps required function properly. The only possible solution was for Vaughn to undergo a second life-saving open heart operation.

We remained in hospital for over two weeks as Vaughn’s immune system was so low after the surgery that he became ill and his recovery time was impeded. After two weeks we were given the okay to go home, but this happiness didn’t last.

In October the doctors realised that Vaughn would need a third operation. When he was admitted in March 2011 we were informed that, due to this period being the height of the flu season, the ward had had to impose visiting restrictions. This meant Vaughn’s three year old sister wouldn’t be allowed on to ward. For either Simeon or myself to be with Vaughn, Willow would have to stay outside and we would have to find some way to amuse her in a hospital – a hopeless situation and one for which we could see no possible solution. It was then that my husband, Simeon, and I were given the opportunity to stay with The Sick Children’s Trust for 25 days.

We felt so lucky to get a room at Eckersley House, the charity’s ‘Home from Home’ that supports families of children at the LGI, as we had initially been told that we were only going to be in for a short time but Vaughn became ill and had to remain in for a month. We have no family in Selby, so we would have had no one to look after Willow had we had to make that decision to leave her. You can only ask friends to help out for so long. However, because of The Sick Children’s Trust, we thankfully could bring Willow and all stay at the hospital. It was such a relief. We want to keep our family together no matter what, and being at Eckersley House helped us do that. It made a horrible ordeal that little bit better.

Willow loved coming over to the house to play in the playroom and even referred to it as the ‘lady’s house’. I think being here gave her a sense of normality, which was fundamental to her not being too affected by this whole situation. We have always been determined that Vaughn will go through this with his whole family there for him, together. During our stay, we would cook together and sit round the dinner table, making the same meals as we did back home. It enabled us to do many of the small things that keep normal family life together. We even were able to bake a cake for Vaughn to celebrate his first birthday in the hospital.

For me, having my entire family around me kept me sane. Having an outside place away from the hospital to be myself, to be able to retreat to help my mind stay focused on Vaughn and getting him through this. He was just so little and I wanted to do everything I could to protect the newest member of our family. Being at Eckersley House helped Vaughn’s recovery no end. Due to an infection he was isolated to his room after his operation but having myself or his dada by his bedside and his sister waving at him from outside the room really lifted his spirits each day.

It was also positive for us to share what we were going through with the other people we met in the house. Everyone had children in the same position and it somehow helps to know that others know how you feel. Although I have good friends at home in Selby, they could only imagine what I was going through. Talking to other families in the house you could tell they really understood and could give advice.

We are back at home now and he is leading a normal ‘little man’s life,’ starting to walk, playing with his sister, even starting nursery. Such is the strength of his spirit; he recently was awarded the Superkid 2011 overall winner by our local paper. As my husband has stated this is as much of award for all those who have cared for and supported Vaughn: the doctors and nurses, in fact, all the hospital staff and importantly all of our new friends at Eckersley House

But he is not through his ordeals yet - Vaughn requires a complete valve replacement. We are just waiting for him to grow enough so that he can have the next major operation, which could be required at any time, he has regular scans to monitor his heart pressure, and if it gets too high he will have to have an emergency operation just to keep him alive. He will continue to have more operations in the future and probably for the rest of his life, but it’s good to know that when the time comes for us to return to the LGI that we can rely on the support of The Sick Children’s Trust once more.

Rebecca, Vaughn’s mum

Our second home at Treetop House

At just three weeks old our son Beau suddenly got ill so we took him to our local GP. Recognising he was very ill the doctor immediately suggested we go straight to our local hospital in Lincoln to have further tests. He was there for three days and diagnosed with late onset Group B Streptococcous Meninigitis and Sepsis. Suddenly he deteriorated so had to be transferred to Sheffield Children’s Hospital, two hours away from our home. Here he spent four days in intensive care.

During this time we stayed at the parent accommodation on the ward but after Beau was taken off intensive care we were no longer allowed to stay there as it was reserved for parents of children in ICU and high dependency units. Whilst it was obviously a blessing that he was doing so well, in the same breath we now had the added concern that we were left with nowhere to stay. Luckily one of the nurses on the ward mentioned The Sick Children’s Trust and Treetop House. She offered to make a call to get us on the waiting list for a room.

She called Ann, the house manager, but unfortunately there was a long waiting list as the house was so busy. But our names went down on the list and we kept our fingers crossed. For the next week my partner, Kieran, and I stayed on the ward as leaving Beau wasn’t an option either of us would consider.

The situation was immensely stressful. We were sharing a one person camp bed or taking turns to sleep in a chair whilst the other one slept in the bed. It put such a great strain on our relationship that the day Ann came down to the ward to tell us that a bedroom had become free I could have kissed her with joy!

The mental and physical cost of staying away from home too had been mounting up. Our families were bringing us food parcels when they came to visit, but more often that not we were surviving on canteen and vending machine food. At one point I got very ill from not looking after myself properly so when we arrived at Treetop House it was heavenly to be able to cook a proper meal for myself and Kieran. Just to sit down at a table and not have to balance my dinner on my lap or wolf down some food in between visits to the ward was a real mood lifter. I also found the simple act of cooking also took my mind off the day and gave me something to focus on other than Beau’s illness. In particular this was something that really made me feel at home in the house. Whilst I was making a meal, I never wanted for a utensil or a piece of equipment, it was almost like being a home in my own kitchen. It wasn’t just about making do, everything I needed was there, and this provided me with a sense of comfort.

As Beau was a newborn I really felt the strong urge to bond and wanted to breast feed him so it was a great relief to have the phones in the bedrooms which gave us a direct link to the ward. I would sit in the comfort of my room and express my milk and then call down to the ward near his feeding time and let them know I was on my way down with my milk to give to him. This was particularly important as the doctors had told me that the antibodies in my milk would help boost his immune system which in his delicate condition was vital in helping his recovery.

The rooms were so clean and in particular the bathrooms. The showers on the ward weren’t that great either so the joy I got from being able to just walk out of a hot shower and not have to put on a pair of shoes to walk across the room, but instead just climb into a clean bed and gather my thoughts was immense. In the early days on the ward I was like a zombie, running myself into the ground. You can’t underestimate the importance of a good night’s sleep when you are in a stressful situation like ours. Waking up refreshed the next day, you find yourself ready to face whatever meningitis has to throw at you.

Being in the house with other families also helped to share the burden. When you are having a good day you can share your highs and when you are having a bad day you take comfort in the fact that others know what you are going through. Whilst the support from your friends and family is of course wonderful, they have no concept of what is happening and what you are going through. The other families at Treetop House know first hand the trials that each day brings with them and I drew great comfort from my talks with other parents in the same position.

Beau is doing really well now and we are just dealing with his follow up appointments which are split between Lincoln County Hospital, Grantham and District Hospital and Sheffield Children’s Hospital.

When we were last at Sheffield it was great to see a friendly face in Ann and the team and as I was driving up the road and saw the flag outside the hospital I said to Beau, “look Beau, we are home”, and it really does feel like our second home. Although we have gone through one of the worst times of our lives, we also have some really fond memories of our time there and that is in large part due to the support we received from the Sick Children’s Trust and all at Treetop House.

Kate Tyminska, Beau’s mum

We were only minutes from Eve’s bedside

My daughter Eve was having a day off school due to a minor illness when she suddenly collapsed and was rushed to the Royal Victoria Infirmary. Eve had experienced a massive bleed to the brain with no apparent cause leaving me feeling helpless and very worried.

Eve’s mother and her husband joined me immediately at the hospital to spend what would be an incredibly difficult first night at the hospital. In the panic we had left basic necessities behind and had to make the unpleasant decision to leave Eve’s bedside to return home to collect what would be needed for our stay. Every mile of that journey felt like an eternity and I couldn’t wait to be back at my daughter’s side.

I never wanted to be that far from my daughter’s side again and therefore when we were directed to The Sick Children’s Trust’s Crawford House by a social worker from the hospital it felt like an incredible weight had been lifted from our shoulders. We were able to stay in this ‘Home from Home’ knowing that we were only ever a couple of minutes from Eve’s bedside and it was fantastic to know that the practical needs of having a place to eat, sleep and wash were no longer a concern.

The house was also brilliant for my youngest daughter Mia, who instantly felt at home in Crawford House. In other foreign places, such as hotels, Mia has felt unsure of herself and required frequent reassurance; however this friendly environment with incredibly approachable staff clearly made her feel safe. Knowing that Mia was comfortable was another thing off our minds during this stressful time.
It was also very beneficial to meet other residents in the communal dining room. Everyone is going through similar circumstances and can empathise with our situation. Occasionally people talked to each other about their children but everyone was also sensitive to each other and respected that sometimes people need to just sit quietly.

Eve has now been moved from the Paediatric Intensive Care Unit to the neuro-ward. A stent has drained fluid in her brain and she has been more responsive since; opening her eyes, making sounds and trying to move her arms. Without the continuing support from Crawford House, this whole experience would be significantly worse.

Eve is still very poorly and therefore it is comforting to know that if I did need to draw on Crawford House again, the staff involved would do all they could to accommodate me. I truly believe that family is the best medicine and cannot thank The Sick Children’s Trust enough for giving us the opportunity to be as close to our daughter as possible in her greatest time of need.

Our time at Treetop House by Marie Boden, Jayden’s mum

Our son Jayden was born in Rotherham in November 2010 with cystic fibrosis. Further testing with an X-ray revealed that he had a blockage in his bowels, so he was transferred immediately to Sheffield Children’s Hospital and at only five days old he had to have an operation.

After this everything seemed to be okay, but then he started losing weight rapidly and at the start of February 2011 we had to take him back to hospital for a week to undergo tests. He was released for the weekend and we were hopeful that he had turned a corner but then he took a turn for the worse and was readmitted for more tests. We were on the ward for two weeks before the doctors told me it would be a long term stay. It was at this appointment that the consultant mentioned The Sick Children’s Trust and its ‘Homes from Home’, as it became clear that this time we were going to be in hospital for quite a while.

Before we got a room at Treetop House we were travelling back and forth from our home in Rotherham, which was half an hour each way, and with neither myself nor my partner being able to drive, we had to use public transport. This isn’t ideal when you have a sick child and every second counts. We just wanted to be close to Jayden all the time.

The first week Jayden was on the ward, when we didn’t have anywhere to stay, we were going back and forth to do our washing. We were just rushing into our home, tidying and putting a quick wash on with enough to keep us going for a few days before going straight back to the hospital. Eating out was also proving expensive. We didn’t want to stay at home and make meals as being by Jayden’s side was our priority, so we would grab a quick snack from the hospital canteen just to keep us going. All these little things added to the stress of what we were already going through, but once we found accommodation at Treetop House these were no longer an issue. It’s these little touches that make such a difference.

Staying at the house not only helped us to physically stay close to Jayden but also mentally gave us peace of mind. When we were staying there we used the phones in the rooms to keep in touch with the ward and would often call down just to check on his progress and make sure he was doing okay.

In the last few weeks Jayden also came and stayed with us in the house and although he is too young to take advantage of the play room or even watch TV, I can’t tell you how wonderful it felt to be like a normal family. As Jayden got ill pretty much straight away after he was born, we haven’t had the chance to do “normal” family things like cook a meal together or just sit in the room and play with toys. The Sick Children’s Trust provided us with a place to do that and really helped us all bond together as a family – I think spending this type of quality time together also helped Jayden to recover quicker, as it is so much better being close to one another. I am sure having us around and being away from the wards gave him strength to get through his illness quicker.

My mum and dad also came for a visit as they were desperate to meet their first grandchild. It was so just so lovely to be able to sit in the lounge at the house and relax with a cup of tea and talk to mum and dad and let them sit and cuddle Jayden without all the noises of the ward going on in the background. As well as having our own family around us, meeting other families also helped as it was reassuring to know we were all going through the same situation. We could draw on each other’s strengths and support each other through the good times and the bad.
We’d never been to Sheffield before and coming from Rotherham was quite disorientating. The house managers were wonderful in helping us adjust to our new situation and letting us know where all the shops were, which we would never have had time to find on our own.

We have just left the house and are going home for the first time which is very exciting for us. We will have to come back every week for a check up for the rest of Jayden’s life but thankfully it should only be for a day visit. I can’t thank The Sick Children’s Trust enough for its support during this time.

From Gibraltar to London

The Wilson Family






My family first stayed at Stevenson House in August 2010 for three months when our 11year old son Jack was diagnosed with a tumour in his pituitary gland. We later found out this was part of Cushing’s disease - a rare and difficult condition to diagnose.

When our hospital in Gibraltar confirmed that we would have to have him transferred to the UK to undergo tests we didn’t know how we would manage and as we also had two other young sons to consider the panic set in at an early stage.

Thankfully though, through searching online and with a little guidance from a kind member of Jack's clinical team we were told about The Sick Children’s Trust’s Stevenson House, so my wife Lynn and my boys Sheigh, nine, and Ellis, seven, had a new temporary ‘Home from Home’.

Staying at the house helped in many ways. First of all I could not work and look after my other two children. Instead of my wife being confined to a hotel room with two small boys, the home provided a warm and friendly atmosphere which helped to take away the feeling of being alone in a large city.

The house was very near to the Royal London Children’s Hospital, making what would have been a long trip back and forth to the hospital more manageable. The facilities at Stevenson House also helped, as we sometimes found ourselves having to cook a meal at 11pm at night so knowing that we didn’t have to seek out a late night restaurant to find some food was a reassurance. Just eating at the house was a breath of fresh air that broke up the monotony of the hospital.

Meal times were an essential part of our daily routine and crucial in giving our other two children stability. Being able to store our own comfort foods helped my children to keep their mind off of their brother and keep a modicum of normality. Financially it was a weight off our mind at a time where so much was in the balance.

It was also comforting for Jack to know I was only just around the corner. We promised him a trip in the wheelchair once he got out of the Intensive Care Unit (ICU) and the smile on his face when he had his first home cooked meal can't be put into words.

When Jack knew he had to stay in hospital on his own he was reassured that he had a direct telephone line to our room in the house. During the weeks of ICU that link became more vital as my wife and I rotated shifts around him whilst managing two other small children.

We made many friends in the house and it was comforting that others around us could understand what we were going through. Our children also befriended other children during our stay which relieved their boredom and also helped them through a difficult time, taking their mind off what their brother was going through. They loved playing in the house as there was plenty for them to do and they went through most of the video collection! Jack came over to the house too and was allowed to stay for the day of Halloween. We managed to buy some pumpkins and scoop them out and put them in the window; memories like that last a lifetime.

Having Sheigh and Ellis stay with us at Stevenson House was essential. We had decided before we came to the UK that we were in this together as a family and it would have destroyed us if they hadn't been allowed to stay. We are a very close unit and we do most things together. They were also old enough to know what was going on and I know they wouldn't have forgiven us if we hadn't taken them.

The Stevenson House staff were helpful in so many ways that may seem trivial to others but to us they were a god send. For example, just highlighting points of interest in the area or explaining where the nearest park was for our sons, sharing helpful tips on transport and generally making us feel at home so we didn't feel isolated. It meant so much for the staff not only to be interested but also concerned; their enthusiasm and compassion were to be applauded.

Jack has improved dramatically now and is back to school and although he is medication dependant, we are positive about the future. Recovery is a long process but he is looking forward to his next trip to the UK in September and in his own words he said "I never thought I would ever tell you I was looking forward to going back there." To me that shows how much he has moved forward.

We have stayed at The Sick Children’s Trust twice more since our initial visit last year. As someone that lives 2000 miles away it almost brings me to tears when I think how easy this charity made my most difficult time, especially as we knew how busy the house was. The Sick Children’s Trust showed all the qualities which you would expect from a professional organisation and I cannot thank them enough.


By Neil Wilson, Jack’s dad

Stevenson House saved us.

(Christopher on the beach post operation)

When we discovered that our young son Christopher would need an operation to remove his eye due to retinoblastoma, we were very concerned about finding somewhere to stay near to the Royal Children’s London Hospital. The operation was scheduled very early in the morning making it highly impractical for us to travel to London on public transport all the way from Epsom with a sick and understandably uneasy child.

However the hospital directed us toward The Sick Children’s Trust’s Stevenson House, right next-door to the hospital. This allowed us stay together as a family the night before Christopher’s operation, removing the added stress of travel arrangements on this already worrying day. Having a safe, comfortable and friendly place where we could cook meals and have a bath was a godsend. It also really helped us settling Christopher the night before his operation.

Christopher absolutely loved the house; he could play quietly and watch TV away from the busy hospital environment. The staff members in the ‘Home from Home’ were so welcoming and were fantastic with Christopher and while he refused to eat in the hospital he was happy to eat at the home as it felt like a normal environment. The staff’s little touches like providing him with a ‘Finding Nemo’ soft toy helped distract Christopher from the nature of his trip. The house manager was fantastic and very approachable she always found time to talk with us and was a big hit with Christopher.

It was also really beneficial for us as parents to spend time with other families staying in the house. We had dinner with those who understood the anxiety of having a sick child and as a group we shared our experiences, helping to lessen the isolation and fear we felt during this stressful time. Staying at the house was incredibly helpful as the ward had no facilities for family members whatsoever; having somewhere that we could take turns to wash and rest made the entire experience far more comfortable.

Christopher is now a happy, healthy six year old. We have stayed at Stevenson House on a number of subsequent occasions when Christopher has needed checkups and it is always a pleasant experience. We feel such gratitude towards The Sick Children’s Trust for providing this help when we were at our most vulnerable and frequently donate toys and money in the hope that more families can access this much needed support.

Victoria Payne, Christopher’s Mum

Our Three Peaks adventure by Rob Clark, The Sick Children's Trust Corporate Fundraiser

Friday 16 September

9am: I am standing in a bus depot in Northampton thinking what have I let myself in for? I am about to help drive a 17 seat minibus for the very first time, filled with a team of volunteers from Barclays, over 1200 miles to complete the 24hr Three Peaks challenge.

10am: Everyone's on board , the Sat Nav is working, we've only gone 100 yards and my co-driver Craig tells me I've just driven past our very first right turn! This is going to be a very long 1,200 miles.

4-5pm: The drive is going well, the M6 just seems to be endless but everyone is in high spirits. The views, as we drive through Northern England and into Scotland are stunning with rolling hillsides, sharp escarpments and lochs that stretch out as far as the eye can see.

8pm: We finally arrive in Glen Coe in bonnie Scotland. Driving through Glasgow, in a minibus during rush hour, was an experience as were some of the long and winding roads that hug Loch Lomond. However Craig and I made the time just slip away (the others mentioned the word purgatory!!) with our karaoke stylings of Tom Jones, The Proclaimers and Chaz n' Dave's greatest hits.

Saturday 17 Septeber

5.30am: Craig and I (now known as Mum and Dad) are up with the lark cooking a Full English breakfast (or would that now be called a full Scottish) for everyone in the team and we even did the washing up!! Owning our own Café is surely just a matter of time.

7.30am: Our intrepid Barclays mountaineering team of Gemma, Ian (team Leader), Karen, Ian, Anj, Howard, Lydia, Andrew, Amie, Clare and Derek are assembled at the foot of Ben Nevis. It's raining but what's new and after a quick photo shoot and a safety chat from Ian, off they go to take on the UK's highest peak.

4pm: After one hell of a climb they are all back down and in one piece. The summit was shrouded in cloud but when the weather broke, on their way down, they had some fantastic views of the Scottish countryside from over 3,500 feet up. Mum and Dad had been shopping so we had lots of goodies for our weary climbers to eat and drink. Craig whipped up his signature dish of Pasta with creme fraiche and peas and I was in charge of buttering the rolls.

5.30pm: Back in the van, I once again decided to take a slightly different route to the one offered by our Sat Nav as I drove into a local hotel car park. Although it was a quieter it was not the most direct route back onto the motorway and the well disguised speed bump did my driving credentials no favours either. With no damage done to either bus or passengers we continued on but I'm sure we didn't have a sun roof where Clare was sitting before we started!!

For safety reasons it was decided by Ian and the group to miss Scarfell Pike and go straight onto Snowden. Disappointing for some but safety had to be the maintained at all times. So, cue Tom Jones on the CD player and we were off again for a fun packed nine hour drive to Wales. 10 minutes into the journey and everyone, apart from me and Craig of course, were fast asleep! Our route is being accompanied by torrential rain and strong winds but as if by magic for our sleeping beauties in the back we arrive safe and sound at Pen-y-pass at the foothills of Mount Snowden.

Sunday 18 September

3am: With the rain still lashing down, Ian, our mountain guide has another chat to our climbers with strict instructions to ensure their safety on the mountain. Whatever I say about this group from Barclays is not enough because they were superb throughout the whole trip. Cheerful, determined and a pleasure to be with in challenging conditions. Unfortunately injury and coldness to some of the members of the team meant they didn’t reach the summit but their commitment to this venture and towards our charity is first class.

1pm: We arrive back in Milton Keynes, we all hug and say our goodbyes. I feel this shared experienced has enabled us to get to know each other better and our partnership with Barclays is going from strength to strength. The minibus driving went well too with Craig and I taking it in turns to sleep whilst the other was at the wheel. In the end our Three Peaks team has managed to raise over £3,500 and with Barclays matched funding scheme, that amount will increase to £6,500 which is a brilliant effort and will benefit our charity and the families we help enormously.

Thank you to Gemma, Ian (team Leader), Karen, Ian, Anj, Howard, Lydia , Andrew, Amie, Clare, Derek and of course my co-driving buddy Craig.

Our stay at Eckersley House

My husband and I stayed at Eckersley House from January 2011 for nearly three months as our son Josh, who is two years old, has a congenital heart defect, which the doctor has described as unique and complicated.

We found out about The Sick Children’s Trust through the Children’s Heart Surgery Ward at the Leeds General Infirmary when Josh was admitted to the cardiac unit and they have been a massive help not only practically but emotional too during this time.

Living in Pontefract, Eckersley House has helped us financially as we have not had to pay for petrol or a hotel; it really has removed some stress. It has been so important to be across from the ward, having nearly lost Josh five times during his treatments, it is absolutely critical that we are here. I couldn’t even imagine not been able to hold his hand when he needed me at any point day or night, and thanks to The Sick Children’s Trust I didn’t have to endure that.

Being at Eckersley House has helped give the family a sense of normality. Josh’s older siblings have come over to stay and we have all sat down together around the table and eaten a home cooked meal. Josh has actually eaten more at Eckersley House than the hospital as he doesn’t like the food off the trolley, so it’s been an important part of his recovery – keeping his strength up.

My husband Tony and I have also found respite at the house. It allows us to spend some quality time together and take stock of the situation, away from the wards, which given the stressful nature of our circumstances, don’t really help you to think straight.

We have met some lovely friends through staying at Eckersley House and it’s been such a comfort knowing others are going through similar situations. Jane and the team at the house have been so fantastic, helping us feel settled and have become our friends and allow us to interact in an otherwise unfamiliar environment.

Josh now has outpatient appointments and is in palliative care so we will still be staying at Eckersley House when necessary. We are so grateful to The Sick Children’s Trust for providing a great service in our time of need.

Jo Smith, Josh’s mum

All the way from Gibraltar.

Pic caption: (L-R) Liana, Dario, Gianara and Angelo Vassallo

When our son Dario was born in our local hospital in Gibraltar, the first few days of his life were like any newborns. However by day five, when the midwife came to check on him, she noticed that he was losing weight and was very lethargic.

I was breast-feeding him like I did for his sister but there was something wrong which no one could pin point. At the beginning, the medical staff said it was a feeding problem, so we tried everything to make him eat more but he still wasn’t gaining weight so he was admitted to hospital where we stayed for nine days.

During this time the doctors did lots of tests and Dario was being tube fed. On the outside everything seemed okay but it was obvious that Dario was not. Then they did a metabolic screening and saw that he had acid in his blood and we were told by the doctors that they did not know how things were going to turn out for us.

That afternoon Dario and I were rushed by an air ambulance to Great Ormond Street Hospital (GOSH) in London. As only one parent was allowed to fly in the air ambulance my husband had to join me on the second day.

It was such a long way from our home and I was so disorientated when we arrived that finding a place to stay was the last thing on my mind. All I could think about was our son, and him getting better. On the first night I was found a room on the women-only mezzanine at the hospital but by the time my husband arrived the next day I was told we couldn’t stay at the hospital indefinitely and we weren’t sure what to do. We didn’t have any family in London and we couldn’t afford to stay in a bed and breakfast long term, but then the Family Accommodation team at GOSH mentioned The Sick Children’s Trust’s Guilford Street House to us. We stayed with them for three weeks in August 2010.

From the moment we entered the doors at Guilford Street House we felt at home. It has such a welcoming and warm feel to the place, not at all clinical like the wards, and it also felt like a safe haven, where my husband and I could be together and face each day as a family with a clear head. We were just around the corner or a phone call away to our room, should an emergency occur. We had that constant reassurance that we were as close as we could be.

Being around other families in similar situations made us realise that we were not so alone. We met this Portuguese couple and they shared their stories with us and us with them. We enriched each other’s lives and drew the positive out of our situations.

Also, for Dario I know being very near to us helped him cope better with the situation and had a positive effect on his recovery. He was so young and I wanted to do everything in my power to ensure that the bond between him and me had the opportunity to grow still, given the circumstances. By having a place to stay so close to the hospital, every precious moment could be spent by his side.
A few days before returning to Gibraltar, the doctors advised us that it would be good for us to try and deal with Dario’s condition outside of a hospital environment. I was very scared to do this, it was an out of your body sensation but we had to face our fears and do it to see how we were going to be in the outside world. We brought him over to the house and it wasn’t nearly as bad as we thought. Being in a familiar environment helped us all relax and take it one step at a time, giving us the confidence for the road that lay ahead.

Tina, the house manager, was an incredible support to us during our stay. She is a lovely lady and a very genuine person. She offered her heart to us and it helped us knowing that she was there with emotional and practical advice should we need her.
Our son is doing really well now and at our last check up the doctors said it was a pleasure to see him so well which was brilliant news. Although we still do not have his diagnosis we are hoping to get it soon, although the fact of the matter is that Dario is now a happy thriving little boy and this is all I can ask for.

We always make a point of trying to pop in and see Tina when we are over and although it is difficult, we did also have some good memories of our time spent at Guilford Street House. It was a privilege for us to be part of this charity which we are forever thankful to.

Liana, Dario’s mum

Our story by Katie Scott, Carmen’s mum

We stayed at The Sick Children’s Trust’s Rainbow House for five days in March 2010, when our daughter Carmen was being treated at Great Ormond Street Hospital (GOSH) after suffering from chronic kidney failure.

Carmen was just 17 months old when she became unexpectedly very ill one day at our home in Polegate, near Eastbourne. She was taken into our local hospital Eastbourne District General Hospitaland at first the doctors thought it was gastroenteritis but then she suffered a cardiac arrest due to severe dehydration and was rushed to Evelina Hospital before being transferred to GOSH with chronic kidney failure, two days later.

At the hospital she was immediately placed on a life support machine in intensive care and we feared for the worst. All we wanted to do was stay by Carmen’s bedside day and night but the nurses told us that the hospital accommodation was only temporary and that it may just be possible for only one parent to stay on the ward.

The notion that my partner, Ben, may have to go all the way home every day, leaving me on my own in such a scary situation, was a horrible thought. But then one of the nurses told me about The Sick Children’s Trust’s ‘Home from Home’.

They were there for us when we thought we had nowhere else to go.

Staying at Rainbow House helped us no end. The house manager, Sandra, was such a lovely person, very kind and welcoming and she made us feel at home as much as we could, straight away. It reassured our families that we were okay and had somewhere to stay so far away from home and it helped Carmen with her recovery as we were able to be with her all the time and we were only staying around the corner.

We had great peace of mind knowing that the ward could contact us day or night through the phone in our room at the house, and having a place to cook our dinners was a huge help to keeping our mind focused every day. It was also lovely to have somewhere to go, just to get away for an hour or so. To have a bath and a comfy bed to sleep in was amazing, even though we didn’t get much sleep!

It was also nice to meet other families staying at Rainbow House and talk to people in similar situations. Just knowing that we weren’t alone helped lift the burden of our situation.

Carmen is on the mend slowly, she will eventually need to have a kidney transplant at some stage in the near future, but for now she is doing so well with both her kidneys functioning at 21%. We want to thank The Sick Children’s Trust so much for being there when we needed them. It made such an awful time that little bit more bearable.