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INSIDE: Supporter Spotlight page 2 | Celebrating 20 Years page 3 | D is for Distraction page 4 SPRING 2012

Celebrating 20 Years... see Page 3 Walking Tall after Surgery at Sick Kids 12 Year-old Rhys Couper grew 6.5 centimetres in a day... and he cannot wait to get back on his scooter or bike and do a sponsored run for the Sick Kids Friends Foundation, but it might be a little while before he is able to do it. This brave 12 year-old pupil at Port Glasgow High School is recovering from Spinal surgery to correct curvature in his spine, which was carried out here at the Royal Hospital for Sick Children in January... but he had already had a long road of treatment prior to that! At just 18 months old, Rhys was diagnosed with Scoliosis and spent many years in plaster casts and a back brace. In 2006 it all became much worse when Rhys was diagnosed with a tumour in his spinal cord. Surgery was only able to remove a small amount of the tumour; taking more of the tumour would have increased risks of severe damage to Rhys’ central nervous system because of the angle of his spine, which was getting worse all the time. Mum, Wendy and Dad, Chris were at their wits’ end... but then after a consultation with Mr Tsirikos at last they heard some good news... he was prepared to consider surgery and the date was set for October. ‘I wasn’t only worried about the operation’ said Wendy, ‘I was also really stressed out about where we would stay while Rhys was through in Edinburgh at the hospital. I needn’t have worried though as a room had been sorted out for me in PJ’s Loft and I was able to stay so close to Rhys throughout all his treatment and the housekeepers were just lovely. Thank goodness Sick Kids supporters provide this marvellous service – I can’t tell you how grateful I was for it’ Without the operation, Rhys would be wheelchair bound

within a year as the curvature of his spine was already at 90 degrees. So on the 17th January this year, Rhys went through the doors of the operating theatre. ‘It was so nerve-racking’ said Wendy, ’but I can’t thank Mr Tsirikos and his team enough. They were all wonderful!’ When Rhys woke up he was pleased to learn that all had gone well – so well that he was back on his feet within a week – a real tribute to his bravery and the skill of the surgeons. Now, only two months after the op he is back at school for 2 and a half hours a day, 3 days a week and after Easter he will go back full time. And some time soon this brave young teenager will get on his bike to raise funds for Sick Kids, just as several years ago others did to purchase the state of the art operating table, highly specialised surgical equipment and image intensifier which are used for Spinal Surgery. Wendy and Chris cannot praise Mr Tsirikos and his team enough for the wonderful job they did but they are also very grateful to everyone whose donations bought this equipment in 2007 – they know that in theatre their son depended on the wonderful skill of the surgeons and Sick Kids Friend Foundation’s innovative equipment and in the Loft, their accommodation was also made possible through donations to the Friends Foundation which provides all the facilities and housekeeping services. That great combination of fantastic skills, innovation and support provided by you, our wonderful donors, is what makes the Sick Kids such a very special place. Now Rhys is standing tall again – he measured 6.5 cms more after the op – and he can’t wait to get on his bike and help make Sick Kids better!

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Supporter Spotlight

Sick Kids Seeks Brave Gamers! Sick Kids Save Point is a 24 hour gaming marathon organised by volunteer fundraiser Tom Freeman. The event is now in its third year and to date over 100 gallant gamers have taken part and helped to raise over £27,000 in sponsorship for Sick Kids. Sick Kids Save Point 2012 takes place October 5th – 7th and if you are over 18 and think you could game for 24 hours, taking part couldn’t be simpler. Visit www.sickkidssavepoint.org read through the tips and safety guidelines, choose when during the weekend you want to do your 24 hour marathon, set up your Just Giving page and you are good to game!

Congratulations to Kirkcaldy Gymnastics Club for raising £831.00 from their annual Obstacle Course Event.

So far six people have signed up for this mammoth marathon and with your support we can take SKSP 2012 to the next level! Sincere thanks to everyone who has helped to make SKSP such a super success, in particular Tom Freeman who so kindly gives of his time and talents.

Many thanks to the Purves Family for donating £166.00 from their fantastic fundraiser.

Zoe’s Story Zoe Burt was born on 30th September 2006 and stopped feeding 3 weeks later which of course then led her family to the Royal Hospital for Sick Children. It was initially thought that she had Gastroeosphageal Reflux disease and she began artificial feeding through a tube into her stomach when things did not improve. Throughout that time Zoe was kept in hospital on many occasions and Mum, Louise, regularly used the parent area on the top floor for a shower and break from the hospital ward. Louise said “The area was beautifully decorated and provided a much needed space to find the energy to keep going when I felt that life would never get better as we were so unsure as to what was wrong with Zoe”. Whilst Zoe continued to struggle to eat she managed to put on just enough weight to grow and her Peg tube was removed at age 2. However it was clear that Zoe had other problems but they were quite subtle so it took a while to identify them but eventually, at the age of 4 years and 5 months she was diagnosed with a very rare genetic syndrome called CFC-Noonan Syndrome.

Trainee Fire Fighters completed a ladder climb and raised £775.70 for Sick Kids. A special thank you to Alpha Squad (pictured) for nominating SKFF as their charity.

art sessions that were available recently through the Teapot Trust who kindly allowed Zoe to stay with them while I spoke to a dietician. As she gets older I feel that it is not always appropriate for her to hear everything that is discussed therefore the provision of services that enables a parent or parents to talk for some of their time without the child is fantastic”. As well as the Teapot Trust’s art therapy we are providing music therapy in the Drop in Centre and Ward 7 in partnership with Star for Harris a charity which as set up by family and friends to commemorate little Harris Ross. His parents were delighted to meet our Therapist, Kristen and hear first hand how well the treatments have been received: our pictures of Charlotte and Drew show how much they enjoyed it. With your help we plan to extend such opportunities for therapies to children throughout the hospital and ensure that facilities for parents remain high on our agenda.

Louise is really impressed with the facilities in the outpatients department. “Zoe continues to receive excellent care from a variety of medical staff and thoroughly enjoys her visits to the hospital as she loves to play in the newly developed soft play area provided by SKFF. We were also impressed with the

Join Spencer and Nina at our Teddy Toddle on 16th June at Meadowbank contact Victoria.E.Watson@nhslothian.scot.nhs.uk


Celebrating 20 Years... It will be the Sick Kids Friends Foundation’s 20th Anniversary in December – for nearly 20 years you have been helping us to provide extra medical equipment, family-centred facilities and support, lots of comforts and treats for our young patients and funding for research and training for staff. There have been many milestones along the way – the retrieval Trolley, the Chapel and Family Centre, CT Scanners, Gamma Camera, PJ’s Loft, OR1 Keyhole Surgery Equipment, KIDSnet and the Drop in Centre to name just a few: and you have helped us to raise almost £17.5 million! We couldn’t have done it without your help – se we’d like to invite you to celebrate with us by making this year our best year yet!!

If Brave Rhys can do it, so can you... Get on your bike and raise funds for the Sick Kids

SEStran Megacycle Taking place on Sunday the 6th May, the SEStran Megacycle is a noncompetitive, all-abilities event that aims to promote cycling for health, fun and as a form of sustainable transportation that can help tackle traffic congestion and reduce the region’s carbon footprint. The 20 mile route runs from Penicuik to Musselburgh and anyone eager to get involved can register through the website www.SEStran-megacycle.co.uk. As with last year, the event generously supports the Sick Kids and participants are encouraged to raise sponsorship through taking part….the organisers aim is to smash the £3,170 raised last year, with your help we’re sure we can do it.

Tesco Bank 4 Abbeys Challenge We hope you like our new updated logo and there are lots of new opportunities to show your support for our wonderful work. • Follow our 20th Anniversary Awards on Facebook, where brave children, top fundraisers and outstanding staff will be recognised. • Vote for your favourite shop display in our Window Dressing Competition in June – Sick Kids Showcase. • Look out for our Jackdrawsanything T-shirt going on sale in early summer. • Join us at one of our events – Ladies Lunch and Teddy Toddle are coming soon. • Put your loose change in a Home Collection Box for Sick Kids – contact alison.cowan@luht.scot.nhs.uk to arrange delivery of a box. • Fundraise with a theme of “20” – walk 20 miles, organise 20 friends or colleagues to help, swim 20 lengths or hold an event on the 20th. • Get sponsored to do 20 “Good Deeds”. Don’t hesitate to contact us through www.edinburghsickkids.org and let us know your plans – we’re looking forward to hearing how you plan to make 2012 Special for Sick Kids.

A Horse with no name has a facelift! The family favourite went for some treatment after 14 years of service without any breaks. Following a replaced mane and tail, he was repainted and given a new saddle and reins as well as having his rockers overhauled. Restored to his former glory! It seems that everyone remembers our lovely horse – but he is a horse with no name…if you can think of one why not go to our Facebook page and start a list for Lorna from Ward 1 to choose from with the children.

If you’re looking for even more cycling challenges then look no further. Tesco Bank have kindly adopted us as their Charity of the Year and as part of their fundraising plan are organising a cycling extravaganza that they have named the “4 Abbeys Challenge.” Taking place on Saturday the 9th June, there are three scenic routes to choose from all set in the stunning location of historic Melrose and involving distances of 10, 45, and 90km. The challenge is open to everyone, not just Tesco Bank employees, and more details can be found at www.tescobankchallenge.com

Pedal for Scotland And if that’s not enough cycling action then do please contact Rachel or visit www. pedalforscotland.org for details of the Pedal for Scotland cycling events taking place on the 9th September.

2012 Celebrations The workplace is naturally a fantastic place to organise events and fundraisers; this year we’re hoping that supporters can go the extra mile to help us make the most of our 20th Anniversary and in so doing help us to raise valuable donations for the Sick Kids. Could you for example get 20 colleagues together and organise your own fundraising challenge to raise £2,000, or even £20,000 over the course of a year! Or why not tie in with the Olympics as a sporting theme as one team of employees from RBS has done to fundraise for us. As this goes to press the team of 6 are attempting to cumulatively cycle 2012 miles before the Olympics, and with the target of raising £2,012. As part of the challenge, they also hope to loose 2012 ounces between them (that’s 9 stone in case you’re wondering!) …we wish them all the best with all aspects of their challenge!

Don’t miss our Ladies Spring Lunch on 20th April – for details contact Linda.cameron@luht.scot.nhs.uk


Revived for 2012... the Boys Bash, our Ultimate Sports Quiz. 75 Sports enthusiasts, a challenging quiz, some amazing auction and raffle prizes and Scott Wilson was always going to be a recipe for success when we hosted the evening at the Apex International hotel in the Grassmarket on Thursday 22nd March. Midway through the evening, birthday boy and parent of one of the young patients who attends the Royal Hospital for Sick Children, Frank Cusack, gave a moving account of his nightmare-come–true when his son, Adam, spent a long spell in Intensive Care at the hospital. Frank inspired all the guests by his glowing account of the importance of PJ’s Loft and the Drop In Centre. He recounted spending time with his other son, Frankie, doing homework in the Drop In Centre while wife, Lorraine sat with Adam in ITU. ‘The hospital saved my son’ he said, ’but the Friends Foundation saved our family’. Many thanks to all our prize donors, our Quiz expert Johnny Craig who provided a challenging but fair test, to Scott who was as ever a highly entertaining host and to everyone who came along and helped to raise over £8,500 for the Drop In Centre on the night.

D is for Distraction... Our latest innovation at the hospital is not a new drug or operation, but a special computer, tailor-made for distracting children, making life easier for children who have to undergo painful procedures in hospital. The Ditto hand held computer, which costs more than £4000, was presented by the Foundation thanks to a donation from the City Fire Fund, which helps victims of fire. It is designed to be particularly helpful for children with burns who need to have painful dressings changed, but can also be used by a range of other patients. Gillian Saunders, Ward 3 play specialist, said: “It helps patients think about something different, it diverts their attention from the procedure and they get to have some fun.” The Ditto contains a series of games designed to distract children, with simple controls which involve moving the console around.

It also has a series of short animations which can help prepare children for potentially frightening procedures, with titles such as Bobby Gets a Skin Graft, or Bobby Goes To Theatre. Our picture (courtesy of Edinburgh Evening News) shows 11-year-old Christopher Fleming, who was born with a cleft palate, and has just undergone surgery to remove a bone from his hip and graft it into his gum. He said: “It’s really good, it’s really fun to play with. I’ve got stitches in my hip and when they changed the dressing I was playing with this.” Maureen Harrison, our Chief Executive said: “It’s tremendous. Everyone is delighted that it makes the children’s experience in the treatment room so much easier. “We’re very grateful to the City Fire Fund, who funded the purchase of this technology with a gift.”

Follow all our 20th Anniversary Awards and Events on www.edinburghsickkids.org


SKsupporternewsMarch2012