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.

Virgin London Marathon (with a difference)

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

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

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

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

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