Martin's Story

As soon as our son Martin was born in November 1992, we immediately knew that something was wrong. His rapid breathing immediately alerted the attention of doctors and Martin was instantly rushed to Alder Hey hospital where he was diagnosed as having ‘Truncus arteriosus’, a rare congenital heart disease. The joy of having our first son quickly turned to terror. Knowing something was wrong made us both feel incredibly vulnerable and helpless. Fortunately after an incredibly shaky start with many scares, including a life-saving heart operation, Martin’s condition improved and we were able to take him home. However we knew that our son would need to have an operation sometime in the future to replace his pulmonary homograph conduit.

Ten years later in 2002, the time came for Martin’s second operation and whilst we had known this was inevitable, the worry and panic remained painfully fresh. Our first concern was how to get to Great Ormond Street Hospital from our home in Hampshire and finding accommodation that would allow us to be close to the ward throughout Martin’s operation. So when we discovered The Sick Children’s Trust, it felt as though a huge weight was lifted from our shoulders. The charity provided us with ‘Home from Home’ accommodation in their Rainbow House that is extremely close to Great Ormond Street.

The staff at Rainbow House were extremely welcoming, especially Sandra the house manager who immediately made us feel more relaxed at this stressful time. Just knowing that we had somewhere close to Martin’s ward where we could eat, wash and unwind was hugely comforting. It was also great for our younger daughter Chloe, who seemed much less worried after we moved into Rainbow House. We remained at this ‘Home from Home’ throughout our son’s recovery and were very grateful for the significant help provided to us by The Sick Children’s Trust.

In August 2010 Martin required a third operation in which a mechanical value would be placed into his heart. We were delighted to be told that Rainbow House had a place available for us once again, so after two expensive nights in a hotel we were back with Sandra in the comfortable and calming environment we had experienced sever years before. Meeting other families in similar situations helped to remove some worries and we all shared our experiences. In Rainbow House we met a couple, Damian and Tina Slack with a daughter, Grace, who was also unwell and we both supported each other through the difficult times. Without the Sick Children’s Trust such support wouldn’t have been there and I feel that we would have felt much more isolated and afraid.

Martin is now doing much better and we are thrilled to have our son in such good spirits, we also are now very good friends with Damian and Tina. We cannot thank The Sick Children’s Trust enough for giving us this vital and continuous support throughout Martin’s operations.

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.

Cumbria RU Charity Bike Ride 2011

The weekend of the 8th-10th July 2011 saw a very different task ahead of the Cumbria RU Development Team, as they swapped their Development Plans for Bicycles!

Earlier in the year RDO Liam Nicholls had the birth of his second child Harry who unfortunately at one week old was taken very ill and rushed to the RVI at Newcastle. During the extensive testing by specialists within the Special Care Baby Unit the worry of where to stay was taken away by Crawford House, this purpose built accommodation ran by The Sick Children’s Trust meant a huge burden had been removed from the shoulders of Liam and partner Sarah so that they could focus on caring for Harry during this tough time. Almost 6 months on and Harry is coping with his Galactosemia through a controlled diet but many other babies who were in hospital at the same time will still be there due to premature births and specialist attention being required. This means that Crawford House will be providing a constant oasis for the parents at this difficult time.

This is what sparked Liam and team into a fund raising effort to support The Sick Children’s Trust rather than giving a smaller one off donation. To raise the target of £1500 it was felt that a unique challenge had to be presented and so the 265 mile cycle around all the Rugby Clubs in Cumbria was decided to be the best option.
The core team consisted of; Liam Nicholls (RDO), Martin Grealish (CRC Copeland), Graham Kidd (CRC Carlisle), Garry Holmes (CRC South Lakes), Kieran Marshall (CRC Barrow) and Ryan Young (Brother in Law of Liam). Support was provided by Trevor Richardson (CRC Allerdale), Russell Gainford (CRC Copeland) and Shelley Atkinson (CRC Eden) with guest riders joining in at various sections of the route.

DAY 1 After a crisp & early morning bus trip to the Furness peninsula courtesy of S H Brownrigg Coaches Egremont, the team got their final preparations in prior to setting off back up the coast on a journey taking in Hawcoat Park, Furness, Millom, Gosforth, Egremont, Moresby, St Benedict’s, Whitehaven, Workington and eventually Cockermouth where they would be camping for the evening. En route the cyclists were met my members of Millom RUFC and lunch was provided by Egremont RUFC giving a much needed boost to the team after a tough mornings work. The next main refreshment stop was at Workington RFC where some ice cold juice and mars bars were provided for all the team, these were key to getting through the final leg into Cockermouth riding into a headwind all the way. In the evening the team received an excellent meal provided by Cockermouth RUFC on completion of a very hilly and challenging first day. Seizing the opportunity to capitalise on some tired legs Cockermouth then challenged the team to a game of ‘Touch Rugby’ which was a competitive event despite the aching limbs!

Trevor ‘Monty’ Richardson who was in charge of logistics also managed to talk Sandra and Steve Stainton into cooking breakfast for the team as well, so a huge thanks to the Cockermouth Club for everything they did to support the fund raising effort. Due to his youthful exuberance Trevor also manage to damage his ribs during a game of touch which prompted a consequent doctors visit and a lack of activity for 6 weeks to allow some healing to take place.


DAY 2 Day 2 produced some very stiff team members and packing up the bags and tents took substantially longer than usual, however the smell of breakfast cooking in the clubhouse was the carrot for all members to increase their pace. After a substantial refuelling the team set off to Netherhall the first call of the day, Netherhall provided more refuelling which was very handy as this proved to be the longest day of the trip, again the hospitality of the club was excellent despite dealing with another convention on the club site. Silloth was the next port of call and then the up and down road to Aspatria was calling all riders! A brief stop at Aspatria saw the riders then set off to Wigton where lunch was waiting in the form of Harrisons Cumberland Sausage Baps, this prospect excited everyone and was probably the fastest 8 miles of the trip, no one travelled the miles faster than Trevor Richardson in the red support vehicle, as anyone knows ‘Pies and Sausage are his forte’! After stocking up on sausage sandwiches the team then set off for Carlisle getting caught up in a horrendous downpour on the way with flash flooding, thunder and lightning all thrown into the equation. However everyone plodded on at their own pace knowing that it would not be too long until we could get dry and warm again. The usual hospitable welcome ensued at Carlisle with a large welcome party but again the stay was brief to ensure we remained on track to complete the ride in a decent time. However the team still managed to take on plenty of Calories thanks to the efforts of Graham Kidd’s wife Suzanne. A brief photo at Creighton was the next stop before the team picked up the pace to cross into the Eden Valley.
Penrith was the next destination where the weather was beautiful, sunny and very warm. Some ice cold Lucozade and King Size Mars Bars courtesy of Geoff Matthews were just the tonic to drive the riders through the final 22 miles of day 2 towards Upper Eden. This was a stunning part of the journey with a lot of up and down riding but the sun shone on the righteous and the arrival at Upper Eden at around 8:15pm was a very welcome one clocking up 104 miles for the day. The news that the tents were not required for the evening was also extremely welcome as the club invited us to sleep on the clubhouse floor coupled with a BBQ to take replenish some more energy.

DAY 3 On the third and final day the team awoke to a beautiful morning in Kirkby Stephen and used the Upper Eden Facilities to make some bacon sandwiches and refreshments to prepare for the day ahead. The morning involved a cycle downhill towards Sedbergh and then onward to Kirkby Lonsdale around 34 miles which unfortunately contained a slight headwind! The weather improved as the day progressed and arrival at Devils Bridge in Kirkby attracted many odd looks as we arrived on non engined bikes amongst the multitude of motorcycles at this famous landmark. After unsuccessfully trying to swap mountain bikes with a number of true bikers we carried on to the club where we were confronted with a Harley Davidson Convention and more bikers! The temptation was almost enough to break a few of the riders but we decided to carry on with leg power for a while longer. Kirkby provided some more sandwiches for the gang and also a crossbar challenge which was won nonchalantly by Graham Kidd who had clearly been saving his energy for this task!
There was unfortunately no avoiding the main A65 road towards the motorway from Kirkby so the riders had to be extra vigilant. We did manage to lose one rider at this point, Calumn Howse who could be seen entering Kendal later on via the main dual carriageway and not the suggested ‘back road’, he was however difficult to miss in his luminous orange top to match his hair!

Looming in the back of everyone’s mind was the upcoming trek up Dunmail Raise after we had left Ambleside, but the team enjoyed the quiet and scenic ride up to Windermere & Ambleside Rugby Clubs with the latter providing some well needed refreshments and snacks plus a blindfolded kicking challenge which Kieran Marshall looked like he had been doing for years! He converted his first effort easily suggesting he maybe needs to do a bit more work!!

The team chatted to members of Ambleside / Westmorland Barbarians happily delaying the departure and hence the climb up the formidable ‘Dunmail Raise’. The ‘calm before the storm’ was a beautiful winding ride bypassing Ambleside Centre followed by the extremely tough ascent of the aforementioned Dunmail. Some riders were beaten by the sheer size and length of the pass but other just ground out the yards and reached the top eventually after what seemed like hours of pedalling. The reality of the situation however was, that we were less than an hour of completing the whole journey with loved ones waiting in the Keswick sunshine for our arrival. An easy rise to the east of Thirlmere and a sharp rise to the Lonsties area of Keswick saw the group congregate ready for the ‘Freewheel’ down into Keswick. The town was doused in sunshine and the breeze blew as all the riders accelerated down the main road hardly touching the pedals for the first time in 3 days! The final turn into ‘Davidson Park’ was excellent as families and friends welcomed back the team after a fairly epic journey, it was extremely emotional moment with all riders embracing one another in recognition of the effort invested in the last 72 hours cycling. Also on hand was a very alert Harry Nicholls welcoming all the riders back from their trek.

Keswick RFC supplied meals of the riders choice which was the most ideal way for the riders to finish and was appreciated by every single individual.
The Cumbria Development Team would like to thank each and every club who came out to support, donate and offer motivation and challenges to the members. Thanks also to SH Brownrigg Coaches, West Cumbria Learning Centre for their support. Final thanks to Liam Magennis of UK Screening Solutions who provided; A Support Vehicle, Liquid Refreshments & Energy Bars, First Aid Provision, Tshirts & Cycling Jackets and a £500 donation towards The Sick Children’s Trust.

Day 1 Miles = 86
Day 2 Miles = 104
Day 3 Miles = 71
TOTAL MILES = 171

We were just minutes away from the ward.

Our daughter Honor was born in October 2010 and we were discharged from hospital and had a lovely few days at home.

However, on day five of life Honor suddenly became extremely unwell. We took her to our local Accident and Emergency in the early hours and after initial treatment in Addenbrookes Hospital, Cambridge, it became apparent that she had a heart problem and she was transferred by the CATS team to the cardiac intensive care unit at Great Ormond Street Hospital (GOSH) in London.

Once there she was diagnosed with an uncommon defect of the blood supply to her heart (ALCAPA) and since first showing signs of being unwell she had, to our horror, suffered a heart attack. Honor had her first operation at just six days old.

It soon became clear that things were not going to be straightforward and that we would have to be in London for several weeks. We have two other children, four year old Angus and two year old Lachlan, and at this stage we realised that we had to provide some
stability for the boys as well as being with Honor.

We were so grateful when a room became available at The Sick Children’s Trust’s Rainbow House, just around the corner from the hospital. The facilities here made it possible for us to maintain a degree of family life at a very stressful time, something that would otherwise have been impossible, or impossibly expensive. We heard of the charity initially from one of my work colleagues whose daughter had had cardiac surgery at GOSH, but the offer was made by the accommodation office in the hospital.

Our two boys were being looked after by my wife, Fiona’s, parents for the first two weeks of Honor’s time at GOSH but as soon as we moved into our ‘Home from Home’ we were able to have them in London for long weekends. Trips to see Honor on the Intensive Care Unit to read her stories were interspersed with visits to Coram’s Fields, Hamley’s and rides on London buses – something of a novelty for boys from rural Suffolk. Angus even started referring to Rainbow House as “our London home”.

Rainbow House gave us the chance to continue to act as a family, even at Honor’s most
difficult times. Our ability to take the boys to see Honor meant that they appreciated how
unwell she was and that we had to be in London because she needed us there. Their initial
fear of all the tubes very quickly changed to instructing their grandparents that they were
allowed to stroke Honor’s head but were not to touch any of the tubes as they were helping the doctors to make Honor better. We very much feel that being able to involve the boys to some extent meant that the transition to having Honor at home again was something they eagerly anticipated and when that time came, went smoothly.

It was good to meet other parents whose children were unwell in the house. Much
discussion ensued about our children’s respective problems and how we were all coping with the stresses of that time. In particular it helped us put Honor’s health in perspective
compared to some other children and families with major problems.

Knowing that Sandra, the house manager, was there on a very regular basis and that the ward knew where to call us at night was a huge relief to us too. We initially thought that we could stay with Honor 24 hours a day but it quickly became clear that we also needed our rest to deal with each day effectively. Sandra dealt quickly and efficiently with any questions we had about staying there and was a great source of support to us - sometimes a simple smile and “hello” can make the world of difference to a very bad day.

By mid-December, contrary to what we were initially told to expect, Honor had had enough of hospital life and decided she wanted to go home for her first Christmas. Our two boys were of course delighted to be back at home and welcomed Honor immediately as their new special sister. Without the ability to have them with us in London we feel this transition could not have been so easy.

Honor has made an impressive recovery with a significant improvement in her heart and mitral valve function. She may or may not need more cardiac surgery in the future; if that is required we are committed to going back to London and GOSH and are reassured by the knowledge that The Sick Children’s Trust will be there for us once again. We are hugely indebted to them for the care and support our family was given during this most difficult time and can never thank them enough.

Sinclair Gore, Honor’s dad.

An evening with the Aber Valley Welsh Male Voice Choir

On Monday 18th July, The Sick Children’s Trust held an evening with the Aber Valley Welsh Male Voice Choir at RGS Newcastle.

The 40-strong ensemble performed a mixture of traditional and contemporary songs including Nessun Dorma, Bring Him Home and the Rhythm of Life. The choir were supported by Morpeth based soprano Rachel Dyson who thrilled the audience with her beautiful voice, performing a mixture of romantic arias and songs from My Fair Lady/

The audience thoroughly enjoyed the evening, not just for the wonderful singing but for the unique sense of humour the choir added to the event. We hope to work with the choir again when they return to Newcastle upon Tyne in 2013.

The event, sponsored by Ward Hadaway Law Firm and hosted by David Haley, was a great success and raised £1200 for our ‘Home from Home’ Crawford House at the Royal Victoria Infirmary in Newcastle upon Tyne.

With thanks to the following who kindly donated raffle prizes:
Dabawal Restaurant, Sainsbury’s Cramlington, The Demon Barber, Cake Poppins, Tyneside Cinema, Benfield Motor Group.

The opening of our new extension at Stevenson House

Yesterday, The Sick Children's Trust held a party to mark the opening of the extension at Stevenson House.

We were joined by about 40 guests which was a wonderful turnout. Some of our key funders who contributed to the project were able to be there which was fantastic and they all raved about the quality of the accommodation and what we do as a charity.

Jeff Brazier had a great time and has promised to support us further. He enjoyed playing with the kids and made the families feel very comfortable.

We are so delighted that the project was completed on time and under budget and that we will now be able to accommodate an extra 150 families each year whose children are seriously ill at The Royal London Hospital.

Make The Children Smile Event 2011, by Heather Brown, Special Events Manager

On Saturday we welcomed 15 children and their parents to Rainbow House for a wonderful afternoon of games, magic and party food.

The families had all stayed at either our Rainbow or Guilford Street ‘Homes from Home’ whilst the children were receiving treatement at Great Ormond Street Hospital.

It was lovely to welcome them back for a fun packed few hours and to see them all laughing and joining in with the fantastic entertainer.

After some great games were played, everyone went down to the kitchen for party food where the kids enjoyed putting on a variety of hats, wigs and glasses.

Once the food had been gobbled up, it was back upstairs for the magic show which the children all loved. A particular highlight was the appearance of Mr Nibbles the bunny rabbit who totally stole the show!

The children all left with a pressie and a cupcake which were baked and donated by the lovely Lily Vanilli.

A huge thank you to the lovely Steph Docherty and Caroline Owen who donated this special afternoon to us. It was great to see them on the day and show them what The Sick Children’s Trust does.

Theo's Story by Kayleigh Crann

At my 16 week pregnancy test my doctor noticed that there was an increased level of hormone in my blood so they sent me off for an ultrasound to check everything was okay.

It was here that I discovered that my unborn baby had gastroschisis, a birth defect which meant my baby’s intestines were sticking out through a hole in his abdominal wall. The doctors told me my son would need urgent medical treatment as soon as he was born as his case was more severe than normal - his intestines, bowel and bladder were all on the outside.

On 14 November 2010 Theo was born at the Royal Victoria Infirmary (RVI) in Newcastle.

Theo was in intensive care for three weeks. During this time there was nowhere to stay in the hospital, so we were very grateful to be offered a room at The Sick Children’s Trust ‘Home from Home’, Crawford House. After three weeks one of us was allowed to stay with him in on the ward whilst the other continued to stay at the house.

Theo had three operations in total, one when he was just four hours old, then another when he was two weeks old. It was a very stressful time, it was awful, I couldn’t even hold my baby until he was three weeks old. But thanks to the support of The Sick Children’s Trust at least we knew we were as close by to him as we could possibly be.

The staff at Crawford House were brilliant and gave us lots of support. Everyone was really helpful and it meant a lot to us to have accommodation close by to Theo. To have to travel to and from the hospital each day from Sunderland would have been very stressful and we wouldn’t have been close by if we were needed at short notice. It was one less thing to worry about and, most importantly, it meant we could spend every precious minute with Theo.

Because of the fragility of Theo’s condition, it was also reassuring having the phones in the rooms at Crawford House, meaning that the ward had access to either myself or my partner at all times, day and night, should, God forbid, anything go wrong.

The house was also very well equipped and really was like a second home for us. We could do our washing and cook family meals in the kitchen with other families in similar situations to us.

Theo was at the RVI for two months and the support we received from the charity during this time can’t be underestimated. Thankfully, he is back at home now and has made a full recovery, but we really appreciate all the help we received from The Sick Children’s Trust during one of the worst times of our lives.

Our world was turned upside down in an instance

Our daughter Issey was born in March 2010, four weeks early. At the time everything appeared to be fine, she was doing very well and we were extremely proud parents.

At about six weeks old our health visitor came for a routine visit to our house in Norwich and noticed that her breathing was a little heavy and asked us to book an appointment with the doctor immediately. Although concerned, we just thought that Issey had a cold and she had mucus that she could not disperse.

However, after seeing her, the doctor referred Issey for an appointment at the local hospital for some very thorough examinations. It was at this appointment that our world fell apart.



There we were told that our daughter had a hole in her heart and she was referred to cardiac specialists at Great Ormond Street Hospital. Within a month we found ourselves on our way to London so that Issey could undergo her pre-operation assessment before the big operation the following day.

That night, the hospital put us up in a hotel so that we could all be together, but after that they told us that they could only accommodate my wife Louise who could stay with Issey until she came home. I was left to find alternative accommodation. This was something that had never crossed our minds. I guess we just hoped that we would find something close by where we could all be together. I did not account for not only the emotional strain of the thought of being separated from my daughter and wife during an extremely stressful time but also the financial cost of staying at a hotel or bed and breakfast in central London.

Thankfully we were put in contact with The Sick Children’s Trust and its ‘Home from Home’ Rainbow House which is situated just round the corner from the hospital. They had a room that was available so the both Louise and I could be together whilst Issey was being cared for in hospital. Sandra the house manager was so understanding, helpful and considerate to our situation and she took a big pressure off us.

Being at Rainbow House meant we could focus on spending time with our daughter whilst being together through those initial difficult days after Issey’s operation. The house was very comforting with all mod-cons and was always clean and tidy and, given the circumstances, was a lovely, warm place to be.

The fact that we were given our own key so that we could come and go as we pleased was a blessing as it meant we could spend as much time as we wanted at the hospital with our little girl.

I cannot thank The Sick Children’s Trust enough. They were there when we needed them most and without them I do not think we would have coped as parents. I had never heard of The Sick Children’s Trust before and I guess that I probably would not have heard of them today if Issey had not been ill. However, having experienced what they do I can only reiterate what a worthwhile charity it is because what they offer to families at a very difficult time is so, so important.

Issey’s operation was a complete success and while she will be monitored for the rest of life, it’s like having a new baby home with us - she is now developing like a normal six month old. We are so grateful to all concerned in helping her on the road to recovery, including The Sick Children’s Trust.

Mark Carpenter, Issey’s dad

Sophie's story

At the beginning of January 2011, our baby daughter Sophie was rushed to Leeds General Infirmary (LGI) from our home in Doncaster via an Embrace baby ambulance.

At that time all the doctors could tell us was that her body had started shutting down and we were going to LGI cardiac intensive care as her heart was beating too fast and Sophie was at risk of dying. Over the next week Sophie got stronger but still the doctors could not pinpoint the cause of her sickness. After numerous scans it was found that Sophie had a blocked bowel and would require surgery.

During this time we stayed at The Sick Children’s Trust’s Eckersley House right across the road from the hospital. Before this we had never heard of the charity, but for the next month they played an integral part in our lives and the recovery of my daughter.

With the help of Eckersley House we were able to be at her bedside at all times to care for Sophie and bond with her as she was still only weeks old. The house also helped us to have a bit of stability and order during such a hectic period and cut down dramatically on the need for the 80 mile round trip every day.

Also it gave us a space to relax a bit, in the knowledge we were only a phone call and minutes away from the ward. The house manager, Jane, and her staff were understanding and always helpful and there to give advice and above all there to listen and talk about our situation. I cannot praise them enough for their kindness and the way we were looked after.

Meeting other parents in the house in similar situations and being able to talk to them about their child and their treatments was a source of encouragement and something we drew strength from in those early dark days when we didn’t know what the future held. Thankfully though, Sophie’s surgery went well and the medical team was happy with how it had gone.

Sophie is making excellent progress and is now out of any danger and has told us to treat her the same as a normal baby from now onwards. I can’t express enough my gratitude for this wonderful charity and everything they did for me and my family. It was not the best way to start the new year but thanks to the support of The Sick Children’s Trust things are starting to look up already.


By Ian Jepson, Sophie’s dad

Thank you for Guilford Street House

I was fortunate enough to use the accommodation at Guilford Street when my second daughter, Juliana, was born with complications. She required surgery to correct her organs, but first we had to wait for her to put on enough weight so that she would be strong enough to survive the ordeal.

Staff on the ward where she was being treated at Great Ormond Street Hospital recommended The Sick Children’s Trust’s Guilford Street house when I voiced my concerns over having to be away from my other daughter, Lemi, and my husband, Moses who were back in our home town of Leicester. Thankfully there was a family room going spare at the ‘Home from Home’ which meant my family and I could stay together. We stayed there for nearly two months.

Staying in the house made things so much easier for my family, during what was an incredibly stressful time. It provided a comfortable, secure environment with all the facilities you would expect from a home. We were able to cook, wash and iron – something I never thought I’d take for granted.

My elder daughter, Lemi, who is just four years old stayed with us in the house too. She really enjoyed our time there and spent hours playing with the toys in the playroom and meeting other children. The interior of the house is designed in such a way it really does feel like a home and not just a place to lay your head. This is particularly important when you have children come to stay with you as you want to make sure that they feel as comfortable as possible and with the children’s breakfast bar and piles of toys, Guilford Street is a wonderful place for them to be.

We were also very lucky since, as Juliana got stronger, she was allowed to come off the ward and stayed with us at the house. Tina, the house manager, provided us with a cot and it was just so lovely for us all to have somewhere to spend time together as a family, away from the hospital environment. This was particularly important for me, as I felt as a new mum that I needed to bond with her and by having her around me and the rest of my family, this was so much easier, as I wasn’t as stressed.
When this didn’t happen, the phone in the room also helped to put my mind at ease. And although the ward never had to call me, I occasionally used to call them to check on Juliana’s progress. It’s such a wonderfully reassuring feeling to know that you have a direct line to your child when you can’t physically be there beside them.

It was also nice to be with other families who were all going through the same experience. Being able to chat with each other lessened that feeling of being alone and provided an additional support network. My husband had to carry on working most of the time Juliana was in hospital and came to visit as much as he could, but it was always good to be able to sit down with other people when he wasn’t able to be there, and share your problems.

The house manager, Tina, was very helpful. She is a very caring woman who helped me get through the most difficult time of my life. She was always smiling and stopping for a chat which gives you the opportunity to offload your day on to her. She was also very good with my Lemi and Juliana. My daughter loved popping into the office say hello to her.

Having somewhere to stay like Guilford Street meant the world to me; Juliana was in hospital for three months and I know I wouldn’t have been able to cope if I had to stay on the ward all the time. So having somewhere private helped a lot, both emotionally and physically.

Although Juliana had to go in for more surgery in March, she is starting to do much better and she is learning to stand and say a few words. I am confident that in the future she will make a full recovery and I have no doubt that is partly due to the love and support we were able to give her when she was born, being close to her thanks to The Sick Children’s Trust.

Frida Kusamba, Juliana’s mum.

The Cambridge Summer Walk 2011

The sun was shining for our 2nd annual Cambridge Summer Walk, which took place on Saturday 21 May at the Cambridge University Botanic Garden. 60 people donned their SCT t-shirts and came along to join in the fun to help raise money for The Sick Children’s Trust’s upcoming project at the Rosie Hospital.

The walk proved extremely popular with families, as its short distance (just 1.4 miles) and flat terrain meant that it was suitable for adults and children of all ages. Our keen bunch of volunteers were also spaced around the route of the walk to make sure everything ran smoothly.

After they had finished, our walkers were rewarded with cakes and refreshments and a medal to commemorate all their hard work.

Thanks so much to all the families who came along and to all of our hard-working volunteers, for making this event the great success it was!

Somewhere over the Rainbow

Jon Canning, Joshua’s dad, talks about his time at Rainbow House over the years.

We have been fortunate to stay at The Sick Children’s Trust’s Rainbow House twice over the last two years, as our ten year old son Josh suffers from a rare Crohns like inflammatory bowel disease.

The first time was for a couple of weeks during the summer of 2008, and then we had to use the house again last year for a week in October when Josh was readmitted to Great Ormond Street Hospital for an operation.

We first found out about Rainbow House when Josh was moved from a cubicle, where we were allowed to stay with him overnight, onto the main ward, where we couldn’t. He had been in hospital for four months at that point and had to remain there for another four months, as he was not responding to steroids or any other treatment. As we lived in Kent we were obviously concerned about being there for our son and without being able to stay on the ward, we just didn’t know what to do until the hospital recommended we try the charity.

The second time we stayed there was after Josh’s bone marrow transplant. The doctors felt that a transplant was the best way to control his bowel inflammation which also affected his lungs, knees and stomach to varying degrees. As he was the first ever Gastro / BMT patient at Great Ormond Street Hospital, we were obviously concerned and wanted to be as close to him as much as possible.

During this time we stayed at Rainbow House so we could have some family time together as Josh recovered. Although it was quite difficult with him being in a wheelchair, the times that Josh did join us at the house was wonderful. It helped him to relax, become more independent and gave him a safe haven away from the hospital which he really looked forward too. Even when he was tired he’d ask to go to the house in order to relax. I think just being there gave him a semblance of normal life again and I really believe it was a vital step towards his rehabilitation.

Sitting on a sofa and watching TV in a living room might not sound like much, but compared to lying in a hospital bed in a room on a ward, it is heaven.
The house was also a good base from which to take our younger son out and about in London, as a rare treat when Josh was too tired to spend time with him. Being a huge fan of wild animals, a visit to the Natural History Museum was described as the best day out of his life – it was so nice to let him just be a child again and not focus on his brother’s illness for just one day.

Staying at Rainbow House also allowed us to eat properly without the expense of having to eat out every day. Using the kitchen meant Josh had ‘proper’ food rather than the hospital meals which are more limited in choice – especially with his dietary requirements having been nil by mouth for four months. On the several occasions we managed to all eat together it was fantastic, as we were often always running around that being able just to relax and cook inside the house really lifted some of the strain on us.

Staying at Rainbow House also helped him to learn to interact with his younger brother again after so many months apart. This was especially important they missed playing with each other immensely. To see our two children play there together, relax and watch TV and it really did feel like a ‘Home from Home’, to such a degree that both children called it home. Our youngest told everyone on the train on the way up here once that we had a home in Bromley and a home in London. I suspect they thought we owned two houses and were very rich!

Our house manager Sandra was also a great support. She was the perfect balance of sociable, friendly and warm yet tough enough to command respect and ensure house rules are followed. She was great with our boys and very helpful from day one in every respect.

Josh is currently recovering well although he has lost much of his hearing due to the drugs he is taking and he is blind in one eye as a virus that infected his brain attacked his retina just as he appeared to be making a full recovery.
He is still in hospital and we are looking to get him physically and mentally as strong as possible in the hope that he can be moved to a rehabilitation centre as soon as his health allows. Although we are back living at the hospital now that our other son is back at school, we are still using the kitchen at Rainbow House to cook for Josh as he is able to start eating again after being nil by mouth for nearly seven months.

We are still hopeful he will make a full recovery as far as his neurological problems are concerned, although his hearing and the sight in his right eye will not return. We hope and pray that his left eye will not be affected. Life is difficult but we have never lost hope. The Sick Children’s Trust has provided us with somewhere to stay as a family when we needed it most and has given us lasting and happy memories at a time when they have been few and far between.

Choctastic!

By Heather Brown, Special Events Manager at The Sick Children's Trust.

This year, as part of our Big Chocolate Tea Party camapaign we were lucky enough to be the chosen charity for The Chocolate Festival. We were invited to do a Big Chocolate Tea Party for kids at the event which was held on the Southbank last Sunday.


The sun was shining and around 100 children and their parents joined us to celebrate chocolate in lots of fun ways! We had two craft tables where the kids made pictures and cards of cupcakes and teapots, but I think it’s safe to say that the number one attraction in our marquee was the chocolate decorating!

Expert baker, Lily Vanilli joined us with a variety of bases for the children to cover with treats, sprinkles and of course plenty of chocolate! Thanks to Lily, the kids (and their parents) enjoyed getting creative, and eating the results too.


We were also delighted to see the presenters of Channel 5’s children’s show, Milkshake, Derek and Jen, get involved with some crafts themselves. The kids were definitely excited and they added that extra sparkle to a perfect day.

Thanks to everyone who came along… now, who’s up for doing their own Chocolate Tea Party?!

Treetop House Birthday Party

Treetop House 10th Birthday party by Vicki Smith, Regional Fundraiser (Yorkshire)



On Friday 25 March, The Sick Children’s Trust took over City Limits Dance Centre to celebrate Treetop House’s 10th birthday.

90 guests were treated to a professional dance from Victoria and Matt to Latin and salsa beats, an hour’s entertainment from Mr Tom Jones extraordinaire and MC-ing and disco by notorious DJ Al.

Upon entering a champagne reception was provided by Simpson Millar, followed by a delicious Yorkshire real ale pie with all the trimmings (sponsored by the League of Friends) leaving just enough room for home made cupcakes solely made by Jo Squiers.

There were many fundraising opportunities on the night with the ever popular balloon raffle, silent auction and ticket prize winner; in total we raised £2,000 – way to go Sheffield!

Silent auction winners are:

A Dance with Strictly Come Dancing stars Darren and Lilia: Caroline Kelly

Manchester United tickets: Peter Skipworth

Sheffield United football shirt: Ben

Thomas Sabo charm necklace: Natalie Rogers

A special thank you to Ann, Nichola and Rachel who manage Treetop House and look after the families in their greatest time of need. Flowers were presented to Sue Cartwright, Operations Manager for her ten years of service to The Sick Children’s Trust and to everbody who made it such a fun and memorable night.

Also a shout out to Nicola from City Limits Dance Centre and Simon Taylor (caterers) we could not have done this without you.

A fabulous night was had by all and great feedback about the evening.

THANK YOU for your support, we can support more families and their sick children.