The Sick Children's Trust

Travis pulled through thanks to the support of The Sick Children's Trust

2012-01-31T08:31:00.000-08:00

Our son Travis was born at 24 weeks old in our local hospital in Luton and Dunstable. A few weeks after the birth though it became apparent to the doctors that something wasn’t right and he was in severe pain in his stomach.

At only two and a half weeks old the doctors put him on medication to try and treat him but they soon realised that this wasn’t working as effectively as they had hoped, so he was transferred more than 30 miles away from our home in Stevenage to Addenbrooke’s Hospital in Cambridge.

I went with him in the ambulance whilst my partner Roger followed by car.
When we arrived at the ward, Travis was settled in and the doctor told us that they wanted to monitor him before making a decision on whether or not to proceed with the surgery.

Initially I was allowed to stay on the ward for a few days but I was told that if a child was brought in from further away than us or in a more critical condition we would be moved. Luckily we were able to stay for three days, so this answered the initial stress of the question of where we going to sleep that night.

After three nights we had to make the heart wrenching decision to leave Travis and go home. As we didn’t know about The Sick Children’s Trust and Acorn House we felt we had no option but to make the 60 mile round trip every day for the next 12 days. The stress of doing this was immense, but we had three other children to care for and consider.

In the middle of December the doctors told us that the medication still didn’t appear to be working, and one month after he was born the decision was made for Travis to undergo surgery.

The hospital found me accommodation for one night so that I could be there when Travis woke up but then we had to go back to the round trip to home every day for the next three months.

I can’t even begin to tell you the gut wrenching feeling of being torn between your newborn baby who you desperately want to be there for, and your younger children who wonder where mummy and daddy are going each day.

After his surgery Travis was moved to a ward where I was allowed to sleep by his side and it was here that we learned about The Sick Children’s Trust’s Acorn House. We decided to try for a room so that my partner could stay here and bring over our other children who were just 18, 14 and two. We were worried about the effect it would have on Warren, our two year old in particular, as he was so young.

Having to cope with a toddler in this type of situation was so stressful. Luckily with my eldest being 18, she looked after Holly during the week and then Holly and Danielle would come join us at Acorn House at the weekend, but Warren was different. I couldn’t explain to him what was going on and he didn’t like being on the wards and we didn’t really want to put him through that, and let him see his little brother in that environment.

Acorn House was a life saver for us. Warren loved spending time in the playroom and also in the garden. It was a relief to me to be able to cook him healthy meals here too, and at the weekend when the girls would visit we could all spend time together as a family.

Travis was too sick to come to the house at first and I was only allowed one hour breaks with him away from the ward, but even if it only meant spending 20 minutes in the house it was worth it. To have Warren engrossed in a DVD whilst I fed Travis gave me the sense of normality I was craving so badly.

I also used the rooms to express milk; private space was great. And the phones in the room meant that I could contact the ward to let them know that I was on my way over with food. The washing facilities were also a necessity for us. Travis’s condition meant that he had a short gut and couldn’t digest food properly so he used to leak out onto his clothes. Initially, one of the main reasons we had to drive back and forth from home each day was to do the washing but with the facilities at Acorn House it meant we didn’t have to worry about this and every precious moment could be spent with our children.

Travis is home now and exceeding all expectations. When you have a sick child, as well as all the family and emotional issues you go through, you don’t really think about the practical side of things such as the cooking and cleaning, not to mention finances. Having four children meant I needed space for my children and Acorn House made our life so much easier. I just wish we had known about it sooner.

Angela Hamilton, Travis’s mum

We finally got our happy ending.

2012-01-15T08:19:00.000-08:00

As every pregnant woman does, I had a romantic vision of what becoming a mum would be like. I saw my husband and I leaving the hospital with a baby carrier and balloons with our newborn baby ready to start our new family life together. So, when I went into labour 10 weeks early in December 2010, I knew things would not happen the way I had hoped and life would never be the same again.

Emily was born on Christmas Eve 2010 weighing only 3lb 11oz. Within a few weeks of her birth we were told the most shocking news that any parent could imagine; Emily had a life-long illness, cystic fibrosis.

After moving between several different hospitals, Emily needed surgery and was transferred to the Royal Victoria Infirmary (RVI) in Newcastle, over 50 miles from our home in North Yorkshire. For the first week we travelled the stressful journey daily in all weathers just to spend a few hours with her, but the cost of petrol and my husband’s work pressures meant we couldn’t continue to do so.

Chatting with one of the nurses on the neonatal unit we were told of accommodation within the hospital grounds that had rooms for parents, free of charge, so we could be close to Emily. Everything was arranged for me to stay at the house so Mark could return to work. One afternoon I was taken over to Crawford House, a ‘Home from Home’ funded by The Sick Children’s Trust with a fully equipped communal kitchen, living room and a laundry.

At first I was so nervous, I was worried what the charity house would be like, I didn’t want to be alone whilst my daughter was so sick, would I be safe there on my own? I imagined it to be like student accommodation with sticky carpets, dark corridors and dirty bathrooms. These worries couldn’t have been further from the truth, the house was welcoming, big and airy and above all clean and safe.

The staff were so considerate and gave me a room where there were no families so I didn’t have to lay in bed at night listening to other peoples’ babies crying whilst I wished I had mine with me.

My room was freshly decorated and warm, and I felt safe as soon as I closed the door. The bathrooms were spotless and the shower was better than the one I had at home. The first night I met some of the other families staying there. I heard of sadness and fear as well as determination and strength. That night I cried not just for my own situation but also for the other families and their own sad stories.

Until that day I never knew Crawford House existed but in just 12 hours I saw how amazing this charity home was for so many people. The Sick Children’s Trust allowed me to be with my daughter whenever I wanted and for the first time I could be a mum for Emily and do simple, caring tasks like breastfeed her or just give her a cuddle. This was really important as I didn’t feel like I knew her yet.

Many nights when I couldn’t sleep I would walk over to the unit and sit and chat with her, something I couldn’t have done if I was 50 miles away. I finally started to get to know this strong minded little person and didn’t have to worry about anything but being there. With Crawford House having so many people in similar situations to mine, it was easy to make friends and everyone supported one another. They understood how hard it was and for the first time I met people who actually knew what I was going through which really helped; I didn’t feel alone anymore.

One wet, cold afternoon I returned to the house upset after a small setback with Emily and was greeted by one of the staff. She took me into the office and didn’t just offer me tea but a shoulder to cry on (literally). She held me so tight and gave me the warmth I so needed. The ladies took time to get to know me and went above and beyond their job description, offering practical and emotional help and support when I needed it most. Later that day I found a bar of chocolate left in my room by them to cheer me up; that one small gesture will never be forgotten, it meant so much to me.

On the weekends Mark, my husband would come to visit and we would stay together and spend hours sat around the table in Crawford House catching up and discussing Emily’s care. To sit and have a meal together when we had spent all week apart was wonderful. I was conscious of the fact I needed to keep myself in top shape because I was breastfeeding Emily so it was great to have a proper kitchen and not just a microwave to prepare food in. Canteen food is alright every now and then, if expensive, but in the house I could make home cooked meal, something I would never have had time to do if I was travelling up every day.

After a crazy week of medical talk it was nice for Mark and I to have the peace of Crawford House, it allowed us time to have a catch up without all the commotion of the hospital. I found it so stressful being in a hospital environment all day every day, remembering to wash your hands all the time and with people coming and going, so having some privacy was a tonic. Coming to terms with news is hard enough but when your immediate world never stops around you, it’s impossible to allow your head time to catch up and think. As a result I craved privacy and having space for Mark and I to just be together and talk through things gave us time to think about Emily and her ongoing care. I hated crying in public, the thought that I might be judged by people for being weak meant I spent hours putting on a ‘mask’. I often walked back to my room and just sat and stared at the walls, it was quiet and I could finally cry, not just for Emily and what she was going through but for me and what lays ahead for us all.

Looking to the future we are going to have to visit the cystic fibrosis team every six weeks and we have chosen to keep coming to Newcastle instead going to our local hospital in Yorkshire. The care here is above and beyond what we expected and this is also due in part to the warmth and support we received from The Sick Children’s Trust.

The cystic fibrosis is something we need to come to terms with and learn about but at the moment we have our brave, beautiful baby at home where she belongs and that is all I ever dreamt of. I will never be able to repay the charity for its unconditional kindness and I will always be grateful for the room they gave me when I needed it the most. You never know these charities exist until you need them and I want to let as many people as I can know that they need our help.

Kate, Emily’s mum

Martin's Story

2011-12-30T06:21:00.000-08:00

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

2011-12-15T06:22:00.000-08:00

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

2011-11-30T06:12:00.000-08:00

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

2011-11-15T03:19:00.000-08:00

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

2011-10-31T09:01:00.000-07:00

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

2011-10-12T08:43:00.000-07:00

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.

2011-09-30T13:52:00.000-07:00

(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

2011-09-30T03:00:00.000-07:00

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

2011-09-15T08:42:00.000-07:00

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.

2011-08-28T03:58:00.000-07:00

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

2011-08-12T08:51:00.000-07:00

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

2011-07-28T04:18:00.000-07:00

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.

2011-07-26T07:53:00.000-07:00

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

2011-07-25T02:28:00.000-07:00

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

2011-07-21T08:06:00.000-07:00

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

2011-07-18T06:42:00.000-07:00

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

2011-07-16T07:47:00.000-07:00

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

2011-06-30T09:01:00.000-07:00

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

2011-06-15T15:30:00.000-07:00

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

2011-05-30T09:04:00.000-07:00

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

2011-05-26T10:07:00.000-07:00

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

2011-04-30T10:00:00.000-07:00

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!

2011-04-12T05:13:00.000-07:00

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

2011-03-30T08:51:00.000-07:00

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.

Little Grace

2010-07-07T06:07:00.000-07:00

By Damian Slack. Grace's dad.

My partner, Tina, and I stayed at The Sick Children’s Trust’s Guilford Street House for nearly a month (from April 25 to May 24, 2010) whilst our daughter Grace was being treated at Great Ormond Street Hospital (GOSH). She was just 14 months old.

Grace was initially based at our local hospital, Hillingdon Hospital in Uxbridge, with a preliminary diagnosis of pneumonia and a heart murmur. But in less than 24 hours she began to deteriorate so badly that she had to be transferred to GOSH where she underwent emergency surgery to replace her aortic valve and repair her mitral and pulmonary valves.

During surgery, further complications arose and after a seven and a half hour operation Grace was returned to intensive care in a very poorly condition, so poorly in fact that further emergency surgery was conducted in the Cardiac Intensive Care Unit (CICU). She would remain on this ward for an additional three days with her chest open to aid the swelling and reduce the pressure on her heart.

During this time, all my partner and I could think about was Grace. Our state of mind, as you can imagine, was all over the place and the last thing we wanted to do was leave Grace for even one moment – especially with her being in such a fragile state.

We heard about The Sick Children’s Trust through the accommodation department at GOSH. As Grace was in CICU we were unable to remain with her during the operation, ward rounds, evenings and nights and staying at Guilford Street was an important part of our time in the hospital. It gave us a stable base where we could discuss the events of the day and be together through what we both agree was the hardest time in our lives.

Allowing Tina and me to stay together meant we were able to be there for Grace, knowing that at any point the ward could call us on the room phone or our mobiles and we could be by her side in moments. We were so close to the hospital, we were able to go back for the observations and medications every two hours but also had the normality of being in a house.

One of the best things about having the ‘Home from Home’ at Guilford Street was when we wanted to bring our other children up to visit Grace. We would all meet at the house initially where we would sit down in the lounge and prepare the children for visiting their sister for the first time. This allowed us the opportunity to explain to them what all the machines and tubes were prior to them seeing her.

Another positive from being in the house is that every person staying there has a story to tell and is also at differing stages of treatment/progress during their stay. We met a few families, some of whom helped us get through the long nights of waiting by chatting together over a cup of tea or watching television in the lounge.

There was one family in particular that we became close to, Phil and Tony, who have a 17 month old daughter with leukaemia. In fact, we became such good friends and went through a lot together that they have asked us to be their daughter’s godparents when this is all over.

One of our main dreams from day one in the house, after seeing the children’s breakfast bar in the kitchen, the lounge and the playroom with all the toys, was to bring Grace back to the house and enjoy them. Towards the end of the last week, this was something we found great comfort in.

Our house manager was also fantastic and genuinely cared. Tina knew all of the families’ and children’s names and the condition they were suffering and would regularly ask for updates and had a good ear for listening. She always would make time for a chat and was a dab hand at making the tea while we were back at the house doing washing or waiting for Grace to wake up.

Grace has now been diagnosed with Takayasu's arteritis – an inflammatory disease with unknown causes – and is looking to spend a long while yet recovering. With many more visits to Great Ormond Street Hospital in the pipeline, it is reassuring to know that Guilford Street house will be there to support us should we need it.

Zip-a-Dee-Doo-Dah!

2010-06-21T03:56:00.000-07:00

What a fun day we all had on Saturday 19 June, 2010. Lydia Solomon, community fundraiser, and PR and marketing Manager, Sarah Wallace, were joined by six of our supporters at Upton Park, the home of West Ham United, for an afternoon of exhilarating zip sliding!

The sun was shining as Jolene Cowlbeck, Keith Allen, Jackie Hammond, James Barry and Paul and Leon Woodhouse. took to the ground’s upper stands and kitted up for the 100 yard long zip across the pitch. The strong wind made for an extra exciting kick to the adrenaline which was no doubt already pumping in all those participating.

Our very own Stevenson house manager, Joan Coker, also decide to have a go as a special birthday treat, that, and as a life long West Ham supporter she couldn’t miss this unique opportunity!

The event was run by Zip Slide UK and the team did a fantastic job of calming everyone’s nerves as well as getting them excited about what lay ahead of them. We were joined by a number of other charities on the day, including a wildlife one whose supporters all dressed up as gorillas (that was quite the sight to see!)

The final money count isn’t in yet, but we are looking at raising in excess of £700, which is brilliant considering it was quite a small event.

Thanks again to everyone who was involved. We hope you enjoyed the day as much as we did.

Virgin London Marathon (with a difference)

2010-04-29T08:43:00.000-07:00

By Lydia Solomon, Community Fundraiser

The Set-up

The London Marathon is our most important day of the year for sports fundraising, and what a day it was - 14 runners, one proposal and a very happy Community Fundraiser!

Preparations for the event began last September, when we were finally allocated our precious Golden Bond places. We had seven this year due to a couple of runners having carried over their places after suffering injuries in 2009 and it wasn’t long before the applications started flooding in.

After days of reading through the applications and making some tough decisions, we finally allocated our Golden Bond places to those who we were confident would do a good job.

The other runners were made up of those lucky enough to get their own place through the general ballot. It is always touching when people decide they want to raise money for us over all the other charities out there, so I was very grateful for this.

Fundraising and preparations

And so The Sick Children's Trust London Marathon team was formed and what a good bunch they were! Fundraising began straight away with online sponsorship pages being set up left, right and centre and fundraising materials being sent out regularly.

Unfortunately we had a couple of runners drop out due to injury, but with training of this intensity this is to be expected and these runners have both pledged to use their deferred place to raise money for us next year.

A couple of months before the big day my attentions turned to plans for a charity presence on the day. This is always a big job, as when there are 35,000 runners and over double that number in spectators to take into consideration, there is a lot to think about! I was lucky enough to have my wonderful colleagues offer to help out on the day, so that was one less thing to worry about.

We decided to set up a cheering point near the mile 12 marker so that we could give runners a much needed boost half way round. This would then be followed by a meet and greet at the finish and a post-Marathon reception at a restaurant near the finish line.

So once I had briefed my army of willing volunteers and let our runners know exactly where we would be, I was ready.

The Big Day

Before I knew it, it was April 25th and the day of the Marathon had arrived! Up bright and early I headed to Bermondsey to our cheer point. My boyfriend Gregg, who was also running the Marathon for our charity, travelled into central London with me but we parted ways at Waterloo as he nervously went off to get his train to Greenwich.

I couldn’t have been happier with the turn out at the cheering point. All my colleagues had their Sick Children’s Trust t-shirts on and were waving balloons and a few had brought friends and family. Plus lots of my friends and Gregg’s family had shown up to cheer him on and the father of one of our other runners was there as well so we had a good crowd.

At about 10:30am the marathon masses started to make their way to mile 12 and we had a great time cheering people on, even those who weren’t running for us. Everyone was happy, music was being blasted out from the windows of nearby flats and the atmosphere was electric!

The proposal

Then came the moment that I’ll remember for the rest of my life. My boyfriend, Gregg, had wanted to know specifically where we would be so that he could come over and say hello quickly as he passed. When he finally appeared he did just that, but instead of saying his quick hello before running off, he got down on one knee and produced a diamond ring from the back pocket of his shorts! I was overcome with shock and I was so caught up in the moment that I almost forgot to say yes, until Gregg said that I had better say yes or else he was going get a cramp staying on one knee! So I did and he ran off to finish the race.

But the story took a dramatic turn when Gregg collapsed half a mile before the finish. His body had overheated, with his core temperature rising to over 40 degrees and his heart rate reaching 220 bpm! After two hours of ice-packs and popping jelly babies, Gregg was given the devastating news that because he had not technically finished he would not be getting a medal. But after months of training this was not an option for him so he convinced them to take him back to where he had collapsed so that he could finish. With a bit of help he triumphantly hobbled across the line in an overall time of 6:34:16 (although he was on for a time of just four hours before he had collapsed).

A happy ending

Happily, all of our runners finished and with some really good times. We then treated them to a top notch buffet at the Mint Leaf restaurant on the Haymarket where they were also offered sports massages.

So all in all I’m really happy with our London Marathon 2010, our runners enjoyed themselves and so far we have raised more than £24,000 - Bring on 2011!

Now Gregg and I need to start our own fundraising to pay for our wedding!

Spring Ball at The Hurlingham Club

2010-04-19T06:30:00.000-07:00

The Sick Children's Trust was enormously lucky to be nominated as the first charity to receive support from the recently formed company "Charity Events Ltd". This committee, of five passionate and inspiring friends, has spent the last six months tapping into their personal and business contacts alike, to pulled together what was a stunningly successful ball at the exclusive Hurlingham Club in London.

The event was organised in honour of an eleven year old girl called Georgia, who has been fighting a brain tumour over the past year. During this time, her family have stayed at Acorn House, The Sick Children's Trust's "home from home" in Cambridge and the Spring Ball highlighted her bravery throughout this battle.

The event was hosted by radio and television presenter, Gabby Logan, and guests included her husband and Scottish international Rugby Union player, Kenny Logan, along with Strictly Come Dancing star, Karen Hardy, and, of course, Georgia herself.

With 300 guests and 28 auction prizes, the evening was a fundraising hit and brought in a staggering profit of £62,000 for The Sick Children's Trust!

We are hugely grateful for "Charity Events Ltd" for undertaking this enormous challenge and for creating a fun and memorial evening for everyone who attended. Thank you so much for your support!

A magical evening by Rob Clark, Corporate Fundraiser

2010-03-05T09:31:00.000-08:00

Hey presto!

It was ‘A Magic Moment’ once again last week for The Sick Children’s Trust when The Magic Circle Headquarters kindly opened its doors to our trustees and their invited guests. Not even a torrential downpour could discourage our supporters as they made their way to the champagne reception. Claudette, Jane, Suzanne and I made sure our guests were made to feel welcome and were not denied the opportunity to buy a raffle ticket or two!

On the stroke of 8pm we were invited to watch The Magic Show, a 45 minute exercise in complete bewilderment. How can a marked £20 note end up inside of a lemon? How did the mind reader know that the guy in the third row was thinking of the number 77? He asked a lady in the front row to think of the name of her first boyfriend , she did and he guessed Peter and he was right but how did he know? How ever it was done, it was done well and with slick one liners that kick started what was to be a great night for our charity.

After The Magic Show everyone was invited to sit down for the evening meal and our guests enjoyed the full Mosimann effect with some table magic thrown in from magicians Neil, Graham and James. The wine was fantastic and generously donated by our trustee Gary Boom, another contributory factor to the success of the evening.

The time seemed to fly by as the wine and conversation flowed but just as the coffee was being served the call went up for more raffle tickets: so we obliged. Entire books of £100 were starting to disappear just like magic (no pun intended!) After the prize draw we asked our multi tasking magician/host James Freedman to begin the auction. The bidding began slowly but with James on the microphone the pace began to quicken and by the time we reached the lots for 'Make A Child Smile’ the arms were waving and the heads were nodding. These lots are always popular as it provides the winning bidders with an opportunity to accompany a group of children’s entertainers on a visit to hospitals such as The Royal London , Addenbrooke’s and Sheffield Children’s Hospital.

So well done to our events executive, Suzanne, the evening was a real success and we managed to raise a whopping £60,000 for The SCT. Our little team of Claudette, Jane, Suzy and myself were tired at the end of the night but pleased with the result. A special thanks to our trustee James Rigby who treated the four of us to a full Mosimanns and the best steak I’ve ever had. So well done and thank you to everyone involved for a great FUN-draising evening.

Our Great Yorkshire Dinner Party

2009-12-23T06:12:00.000-08:00

by Laura Burton, hostess of a Sick Children's Trust Great Yorkshire Dinner Party

We held a Great Yorkshire Dinner Party to boost funds towards The Big Move appeal. Having learnt that this local ‘Home from Home’ is moving to Leeds General Infirmary in May 2010 and that is costing £1.7 million, we thought we’d get involved!

We are two late twenty somethings and love going for dinner with friends, so this was the perfect way in which to rasie funds for a great cause. We wanted to do a pre-christmas meal so held a dinner party with a twist: a Xmas Xfactor Xtravaganza! We tied it in with the finale of Xfactor complete with masks and impersonations. However, there could only be one mask for us hosts, Simon Cowell of course (minus the high waisted trousers!)

We laid the table with Christmas crackers, candles, heart shaped lollipops and party poppers (and of course a bottle of vino or two) and our guests arrived at 7pm. We made it clear they were to have a restaurant experience, whereby they paid a set price of £15 for our delicious menu and in return we would run around after them all.

Upon arrival our guests had smoked salmon and brie heure d'oeuvres and a glass of champers and a very warm welcome. We did a brief chat about The Sick Children’s Trust and where the guests' money was going. We sat down in time for the powerful music that welcomes in the judges and made everyone one aware of the rules, fines were to be paid for talking through the songs or for being cheeky to the waitresses! Everyone donned their masks and slipped in to character (some a little bit too much!)

Then we prepared our main course of homemade turkey curry, naan and samosas. It went down a treat, “more drinks anyone?” as we topped up everyone’s half filled glasses! Snippets of conversations included a mixed opinion of George Michael's duet with Joe McElderry and Robbie’s (off que) rendition of Angels with the lovely Olly Murrs. We were watching like hawks to increase our fundraising, hoping more people would speak during the songs!

Dessert was a fresh chocolate biscuit bake with homemade champagne jelly; you could tell the bubbles had a profound effect! This got us all in the mood for musical chairs, musical statues and a dancing competition… you’re only as old as you feel!

We raised £185 for a night we will never forget; not bad considering we had so much fun in the process! Paying it was easy: we just logged on to The Sick Children’s Trust website and voila, paid online!

Christmas Cheer

2009-12-15T06:39:00.000-08:00

Our Events Executive, Suzanne Patrick, updates us on A Christmas Quiz.

As the events executive here at The Sick Children's Trust, it's not really surprising that I love all things festive and joyously embraced the opportunity to put on our first Christmas Quiz in London. However, I was truly amazed that at the enthusiasm for others to get involved and by those who dressed up for the occasion...

Preparations started in full in November, once the Big Chocolate Tea Party campaign drew to a close. There were questions to be written, prizes to be found and most importantly guests to be invited.

Here in London, we've always found it tricky to fill venues. There are just so many different events taking place every night of the week and even the most ardent supporters can't always attend. So we were delighted when tables started confirming and over sixty eager quizzers reserved their places at The Wine Tun.

Surprisingly, finding prizes proved to be the easiest part. Ping Pong and The Real Greek restaurant chains generously donated vouchers for first and second place, whilst comedy club Fymfyg once again came up trumps and sent us tickets for third. The hardest part was actually writing the quiz itself: the questions always seem so much easier when you have the answers in front of you and it's not until you watch people on the night that you know if you have got it right or not!

Fortunately, everyone had a brilliant time and promises to return again next year. A warm welcome on the door by our very own Christmas presents, Sarah and Karen, quickly set the tone for the evening, whilst Chris Fitchew from Beau Productions proved to be a hilarious quizmaster.

The good news is that the Christmas Quiz is now available to download from our website and you can put your family, friends and colleagues to the test!

Wishing you all a very Merry Christmas, Suzanne

Topping out for the Big Move

2009-11-19T03:06:00.000-08:00

Our House Operations Manager, Sue Cartwright, gives us an update on the Big Move Appeal.

Photo Caption: (L-R) Matthew Parsons with our Patron , Christopher Timothy.

Our new house refurbishment at the LGI in Leeds is progressing well and with the new roof near to completion we held a 'Topping Out' ceremony to mark the occasion. One of our patrons, Christopher Timothy agreed to be part of the photo shoot along with the Parson family who have used Eckersley House many times during their son Matthew's illness and treatment at St. James's.

I prayed long and hard that we would have a dry and sunny day as up on the roof there would be little shelter should a November wind decide to blow....my prayers were answered and we were rewarded with a good day!

We all donned our high vis vests, boots and hard hats and the photo shoot began! Christopher and Matthew were stars and very patient during the many photo poses on the ground and up above.

It was a great day and good to meet Christopher who has supported our charity for many years. He was immensely impressed by the new building and how big it will be. He, like the rest of us, can't wait for the day we cut the tape and open the doors so many more families, like the Parsons, can benefit from our work.

Thanks to everyone involved including Jennifer Middleton, The Parsons and the staff from William Birch Ltd and of course Christopher.

A day in the life of...

2009-11-13T08:10:00.000-08:00

A day in the life of The Sick Children’s Trust Corporate Fundraiser, Rob Clark (right, with his sons).

6.45am Rise and Shine! but hark what’s that appalling noise filling the room? Could it be the latest appalling offering from a ‘Britain’s Got Another Celebrity X Factor So Get Me Outta Here’ finalist? Oh no it’s my dodgy radio alarm blaring out interference as it struggles to find the right channel. Whatever, I’m awake now and raring to go and in a single bound I crawl out of bed and prepare for work with near military precision. I can hear my wife Mary asking if I have my train pass, keys, sandwiches etc etc …to which I mutter ‘of course !’ and then spend the next 10 minutes frantically searching for these elusive items. It’s as if these objects take joy in hiding from me in broad daylight only to appear when Mary turns up! With essentials in place I grab my bag and the last slice of toast, kiss the wife and kids goodbye and head for the train.

7.30am Good news, the train is on time - must be my lucky day. It’s not long before I arrive in Whitechapel and the noise level increases as an Air Ambulance hovers over The Royal London Hospital.

8.45am A short walk later and I arrive at Head Office which is situated next door to Stevenson House our ‘Homes from Home’ supporting families with sick children receiving treatment in The Royal London Hospital. First things first and on goes the kettle, then I draw up a rough plan for the day and check with my weekly / monthly schedule to prioritise my workload. On this particular day the top of the list is meeting preparations for my forthcoming visits to Bridgewater Place in Leeds and Yorkshire Building Society in Sheffield.

My aim as Corporate Fundraiser is to build long term partnerships where ever possible, I like to make verbal contact at bare minimum but face to face meetings are best. This is more important now than it has ever been as we work through tough economic times. Corporate Fundraising has been hit and donations have been scaled down as Companies like everyone else are feeling the pinch. We have to ensure, more now than ever, that our approach is carried out in the right way and that we need to maintain and improve key relationships with warm donors and where possible create new ones.

Getting to meet our corporate supporters is vital but so is visiting the real heroes of our charity - The house and assistant house managers. These visits are fun and help build important friendships but also provide an opportunity for fundraisers to see the families and to understand why fundraising is necessary.

10.23am a phenomenon known as ‘10.23sies’ kicks in, a phrase coined by my colleague Sarah due to our inability to wait for the traditional Elevensies. The SCT machine collectively breathes a sigh of relief at the sight of one of our resident tea-aholics collecting empty cups on the way to the kitchen.

10.25am Meeting preparations completed and onto the next job: The Corporate application to Next Plc. I follow a basic format that has been passed down from generation to generation, well from the Head of Fundraising at least. This process starts with a check to ascertain if we are a good fit with Next Plc which involves research. An initial review of our paper and on-line files advises of any prior donations and relevant criteria to be adhered to. A review of the Next Plc Corporate website and Annual Report is very useful and CompanyGiving.co.uk is a great source of information.

Our files show that Next PLC is a ‘warm donor’ - donated to the SCT in the past – and as such these checks are quicker to complete than a review of a cold contact. The next step is to establish any links through our Trustees, or members of staff / friends or relations etc. In addition to this another useful tool is our own information database ‘Donorflex’. The combined effect of this research helps to establish a complete picture of the company and helps to ensure our application is as strong as possible.

A phone call follows, normally to a Corporate Social Responsibility Officer, dependant on the size of the company. The personal touch is essential as the added information received helps us to understand what makes a company tick, are they purely philanthropic or do they have a corporate edge to their charitable giving. Talking to someone also helps to find out how they require the information to be presented and in what format – online application or a formal written request with full back up. Finding these things out not only saves time but gives us a better chance of donation success at the end of the process. (Thank you Mr Cholmondley Warner, you’re welcome Grayson!)

12pm But as with all best laid plans ….Aon Benfield have been in contact and need their collection box emptied and can we collect it. This is done quickly and although unplanned it provides us with another chance to keep in touch with one of our key supporters. On the other hand the totally unexpected can also occur.

1pm Lunch often means a quick dash to Tesco’s and a working lunch but I do try to fit in a short run around Stepney from time to time. It’s a surprisingly beautiful area especially down by the canals in Mile End. My home town!

2pm-4pm The application process to Next Plc is now in full swing. This is not an on-line application so there are no specific categories to follow. The judgement call is trying to gage what will appeal to Next Plc and this is where the experience of my colleagues can be so beneficial. A brief discussion with any one of the team often means various tweaks can then be applied to the application making it a much stronger ask. After a few final checks the application is submitted and now we just have to wait. This is the bit I do not like, the waiting, but that’s the way it is.

4pm I then grab a quick five minute meeting with Andy our Head of Fundraising which can last up to an hour but from it will come more ideas and a new list of potential donors. And off I go again……

4.30- 5pm Another check on emails / follow ups. A call into Sue Cartwright our Operations Manager regarding the Morley Bedding Company and Barker and Stonehouse. These companies are assisting with reducing costs for our ‘Big Move’ appeal in Leeds with supplying soft furnishings.

5pm Continue with follow ups and prepare the groundwork for more potential donors. AstraZeneca’s application is next on the list, another previous donor and a good fit. This is an on-line application through the Company website.

6pm I love this job but things don’t always go as smoothly as suggested above but again that’s the challenge. Yesterday for example my day was sabotaged just before lunch when we were told our long planned Tower Race at Bridgewater Place was under threat. However a few calls later and with help from Charlie Gilchrist, our excellent contact at Manco the managing agents for BP, and we were back on track. This emphasises the importance of time spent developing solid corporate relationships. They are priceless.

7.30pm Trouble free ride home - really was my lucky day - and back indoors chilling out with my family. No doubt playing hallway football with my youngest and spending the rest of evening relaxing in front of the TV.

But guess what? Tomorrow night is Karaoke night with the SCT..what a scream! No literally it will be a scream as none of us can sing a note!

Our Big Chocolate Tea Party

2009-11-03T02:42:00.000-08:00

Fiona Pollington kindly hosted a Big Chocolate Tea Party for us in October. Here she tells us all about her day.

We first heard about The Sick Children’s Trusts plans to hold Big Chocolate Tea Parties on its website in July and straight away we decided we wanted to hold one after staying at Acorn House with our daughter at Christmas.

Our original plan was to invite a few family and friends to the house but before long it had developed into hiring a hall, children’s entertainers, local press, radio and inviting the town mayor!

The planning and preparation went fairly well and we had a good response from various businesses with regards to raffle prizes. Two days before the tea party we met Shaun Udal (former England test cricketer) who kindly donated four tickets to see a game of cricket at Lords in 2010 – what a star!

The main problem we came across was the lack of teacups and side plates, we didn’t manage to get any arranged until three days before the party which was a slight worry.

Three days to go and the big bake started! Eggs, flour, marg and of course chocolate filled the kitchen. I think the oven breathed a sigh of relief when Sunday afternoon came and it finally was switched off. My mum was a huge help and she made some fantastic looking cupcakes which unfortunately nobody got to taste them as she had a slight accident which resulted in them covering the hall floor! Our neighbour and close friend Myles, was also a big help - he made his very first cake especially for the cake stall which was marketed as “man made” and sold to his brother in law to be.

The Big Chocolate Tea Party was a big success and we raised £420. We thoroughly enjoyed organising it and are just so pleased that we have been able to give a little something back after finding Acorn House and The Sick Children’s Trusts such an invaluable facility when our daughter Amelia was so poorly. She has thankfully since made a full recovery and is back to her normal cheeky self!

2009-10-21T04:34:00.000-07:00

Here's our first special guest blog from Jackie Worth, who stayed at Guilford House when her son, Hayden, was seriously ill last year.

In November 2008, our five year old son Hayden was rushed to Great Ormond Street Hospital (GOSH) in London, suffering from kidney failure.

After weeks of misdiagnosis, due to the illness being mistaken for the vomiting virus that was doing the rounds at school, our lives were turned upside down in an instance and we found ourselves leaving Essex on the way to London.

After admitting Hayden for some scans at GOSH, my husband and I realised that as we might be in London for the long haul we needed to find somewhere to stay. The hospital explained that only one parent would be allowed to stay with him on the ward and the other would have to find alternative accommodation.

We were directed to the Western House - parental accommodation across from GOSH - but unfortunately it was full up. Panic started to set in at the thought of the cost of spending night after night in a hotel or bed and breakfast, but thankfully one of the Western House staff recommended The Sick Children’s Trust’s Guilford House, which luckily had room to spare.

From the moment we entered the house, Tina, the House Manager, made us feel right at home. She showed us round and talked us through all the facilities and even showed us the best route to get to the hospital, as we had kept getting lost. The house was a blessing; as it was so close by to the hospital, my husband and I could take it in turns to sit by Hayden’s bed whilst the other one would go back to the Guilford House to get some much needed sleep and use the wash facilities.

Hayden spent 10 days at GOSH receiving his treatment and we stayed at Guildford House throughout this time, completely free of charge. He will have to go back into hospital after Christmas for 10 more days for a second operation but this time at least it’s comforting to know we will be back in familiar surroundings with people who are going through the same experiences we are. We can not thank The Sick Children’s Trust enough for its support.

Welcome

2009-10-16T06:27:00.000-07:00

Hello and welcome to The Sick Children's Trust new blog! Okay, so there's not much going on right now but that's all set to change as we head into winter. Stay tuned for some exciting blog-ness from our team.

PS. In the meantime, why not visit our website? You can check us out on Facebook and twitter too.