Theo's Story by Kayleigh Crann

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

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

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

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

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

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

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

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

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

Our world was turned upside down in an instance

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

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

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



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

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

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

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

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

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

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

Mark Carpenter, Issey’s dad

Sophie's story

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

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

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

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

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

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

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


By Ian Jepson, Sophie’s dad

Thank you for Guilford Street House

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

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

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

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

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

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

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

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

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

Frida Kusamba, Juliana’s mum.

The Cambridge Summer Walk 2011

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

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

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

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

Somewhere over the Rainbow

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

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

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

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

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

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

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

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

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

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

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

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

Choctastic!

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

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


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

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


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

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

Treetop House Birthday Party

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



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

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

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

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

Silent auction winners are:

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

Manchester United tickets: Peter Skipworth

Sheffield United football shirt: Ben

Thomas Sabo charm necklace: Natalie Rogers

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

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

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

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

Little Grace

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!

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.