Lifeline christmas 2015 by Great Ormond Street Hospital Children's Charity

Winter 2015

Giving Stanley and his family a Christmas to remember

Searching for answers to Dylanâ&#x20AC;&#x2122;s undiagnosed condition A breakthrough in epilepsy surgery in childhood

Meet our guest editor…

Inside

Thank you regular givers!

News 04 3D printing, leaving a legacy and hospital staff honours Redevelopment 07 What the new surgery centre will mean for our patients

Guest editor interview 14 Guest editor Sophie talks to her neurosurgeon, Mr Kristian Aquilina True story 16 Moving forward with an undiagnosed syndrome

Cover story 08 Stanley’s Christmas at Great Ormond Street Hospital

Sophie Read Sophie’s interview on page 14. 2

Dylan story ’s

Hello! I’m Sophie, and I’m six years old. I came to Great Ormond Street Hospital (GOSH) when I was five for an operation to remove a tumour on my brain. It was the best place for me to come for surgery when I needed it most. “In this issue of Lifeline, I did an interview with my surgeon, Mr Kristian Aquilina, about his job at the hospital, how he helps children like me, and the equipment he uses. My operation went so well that I went back to school a few weeks later. I had my picture taken, and my mum and dad helped me to make a card with my photo on the front to send to Mr Aquilina to say thank you for what he did for me. “Now I only have to come back to GOSH twice a year for check-ups!

Regular gifts from our supporters allow us to plan for the future because we know that we’ll have a steady income stream day in, day out. These gifts help us to support four key fundraising areas:

08 Research 11 A breakthrough in epilepsy surgery for childhood memory How does it all add up? 12 How do we use the funds you’ve raised?

40 Bernard Street London WC1N 1LE www.gosh.org Tel: 020 7239 3000 Supporter Services: 020 7239 3131 supporter.care@gosh.org

Fantastic fundraisers 19 Just a few stories showcasing your fundraising activities Get involved 22 Join us at one of our exciting events! Lifeline online You can now read this edition plus previous issues of Lifeline on your computer or tablet. Go to gosh.org/lifeline For Great Ormond Street Hospital Children’s Charity: Robert Butt, Giannina Walsh, Jo Satchell and Mark McKenzie-Ray. Great Ormond Street Hospital Children’s Charity Registered charity no. 1160024.

Read online

Thank you!

1. Redevelopment projects such as the major construction project to transform the Cardiac Wing into the Premier Inn Clinical Building, the second part of the Mittal Children’s Medical Centre. This building will house a new surgery centre with stateof-the-art equipment, and will enable the hospital to carry out more procedures. Your ongoing support allows us to fund essential projects like this, which you can read more about on page seven. 2. Fantastic research breakthroughs, including a recent study that has found that brain surgery in children can protect memory development as well as reduce epileptic seizures. Read more about the findings on page 11. 3. New equipment critical for providing worldclass care for our patients. This includes an ultrasound machine, modern X-ray equipment and a microscope to help neurosurgeons perform delicate and life-saving brain surgery. 4. Patient and family support, such as accommodation that parents and families can use to stay near their child at Christmas and throughout the year.

lifeline

gosh.org/

Thank you to Sophie for doing a great job as guest editor. The children’s drawings in this magazine were created by patients at the hospital.

Thank you to all of our donors who support us with a regular gift.

Want to set up a regular gift? If you don’t already make a regular gift to us each month and would like to set one up today, please call Supporter Services on 020 or visit gosh.org/donate

7239 3131

News

3D printer adds new dimension to surgery ››› A team of clinicians and researchers at

Great Ormond Street Hospital (GOSH) have successfully used a 3D printed model of a trachea (windpipe) to help treat six-year-old Katie for a rare respiratory condition. Using a simple CT scan of Katie’s chest, the team created an accurate 3D model of her trachea, which was used by the Anaesthetic team to match the most appropriately sized tubes and practice their insertion into the airways prior to surgery. This made the actual procedure quicker and more efficient. The technique means that the team can create models that are completely personalised to each individual patient in a matter of hours, and it reduces the time a patient spends under anaesthetic.

Talking to…

“This work demonstrates that it is possible to create precise anatomical models of complex organs cheaply and in a very short space of time,” explains Owen Arthurs, GOSH Consultant Radiologist and study organiser. “In the future, 3D printing could feasibly be adapted to scan and create many more organs in the body.” In the long-term, the technique may allow a number of surgical procedures to be performed more safely, quickly and easily. Katie with a 3D printed model trachea

You can view a short video of the 3D printer in action online at gosh.org/lifeline

Colin Wallis, Consultant in Paediatric Respiratory Medicine Every time a child comes into the hospital to have their procedure, they have grown, so they require different equipment to be used for their treatment. “A model that is tailor-made to the child each time they have treatment means that the right sized tubes can be identified prior to surgery, and a child can potentially be under anaesthetic for a shorter period of time.”

The most exciting thing about Christmas is… lots of chocolate! Louise, 13 4

Seeking legal advice for your Will ››› Writing or updating your Will is a big decision.

If you’ve been inspired to kindly leave a charitable legacy in your Will, or you intend to do so in the future, it can be extremely helpful if you share this information with your family and charity beneficiaries. In some circumstances, the law set out in the Inheritance (Provision for Family and Dependants) Act 1975 allows certain people to make a claim after the person who made the Will has passed away. It’s important to seek legal advice from an experienced solicitor who will take the necessary steps to ensure your wishes are carried out and give you peace of mind. We’ve come up with a way to make writing or updating your Will much easier, and it’s completely free. If you contact the National Free Wills Network, they can put you in touch with your nearest participating solicitor. Alternatively, The Goodwill Partnership can arrange for a counsellor to visit you at home.

Talking to…

To claim your free Will, please quote Lifeline 2015. For the National Free Wills Network, please call 0800 011 2030 or email info@nationalfreewills.net For The Goodwill Partnership, please call 01482 976 029 or email goshcc@thegoodwill partnership.co.uk

a lifeline You r Wil l cou ld be eb for chi ldre n like Cal A LEGACY GUIDE

Richard Pragnell, Head of Legacy Administration and Stewardship

Legacies play a pivotal role in GOSH’s pioneering work and our heartfelt gratitude goes out to all our supporters who choose to remember the hospital in their Will. “A number of legacy supporters have expressed concern that the wishes set out in their Wills run the risk of not being carried out. One of the fundamental problems faced by families and courts presented with a Will that is being challenged is that they cannot speak to the person to whom the Will mattered most – they’re unable to ask them what their inspirations and intentions were at the time their Will was drawn up. “In order to avoid potential complications or disputes to your wishes arising, I’d recommend discussing the motivation behind the bequests left in your Will with your family and your beneficiaries in advance. A Letter of Wishes can set out the rationale behind the dispositions made in your Will, which can be shared with family and beneficiaries during your lifetime. “In respect of challenges to charitable legacies, it’s particularly useful to be able to demonstrate a history of association and support for the charities named in a Will, whether this be through regular giving or organising fundraising activities. “Legacies reflect the future and we are extremely privileged to receive the enduring support of those that remember the hospital in their Wills.”

News

Redevelopment

Stocking fillers

Professor Helen Cross OBE

A right royal honour ››› Two Great Ormond Street Hospital (GOSH) staff

members were recognised in the Queen’s Birthday Honours this June. Professor Helen Cross, Honorary Consultant at GOSH, is a leading researcher in epilepsy, and received an OBE for her services to children with the condition. “I dedicate this award to all of the children with epilepsy with whom I’ve had contact over the years,” said Professor Cross. Clinical Nurse Specialist Nicola Bennett-Rees, who has worked at the hospital for more than 30 years, received an MBE for services to nursing. To find out more about the incredible people who work at GOSH, visit gosh.nhs.uk/meet-our-staff

››› A few words of hope and encouragement can make a big difference for our patients, and so a heartfelt message in one of our stockings goes a long way at Christmastime at Great Ormond Street Hospital. We were overwhelmed by your kindness last year. Not only did we use the stockings to decorate the wards, but for the first time we were able to display many of the 80,000 messages we received on the patient entertainment system around the hospital. There’s still time to send your stocking message. Please post it to Great Ormond Street Hospital Children’s Charity, 40 Bernard Street, London WC1N 1LE. If you would like a stocking, please call Supporter Services on 020 7239 3131 or email supporter.care@gosh.org Summer 2015

centre stage

The construction of a new surgery centre as part of Great Ormond Street Hospital’s (GOSH) redevelopment will offer state-of-the-art facilities in which to treat thousands more sick children.

ore than one in three of our young patients require surgery. As medicine advances, the demand for highly specialist surgery at the hospital is increasing. It’s vital that GOSH is able to provide the highest standard of treatments in a modern and child-friendly environment. The new surgery centre will be located in the Premier Inn Clinical Building, the second part of the Mittal Children’s Medical Centre. Work on the building began in October 2014, and on 22 September 2015, the hospital held a Topping Out ceremony to mark the moment when the last concrete pour was completed. The surgery centre will bring together the majority of our surgical patients into one purpose-built inpatient ward with light and spacious facilities to house the most up-to-date equipment. A post-anaesthetic care unit will help streamline patients’ care and reduce the number of handovers with clinical teams. Artists impression of an operating theatre at the new surgery centre

HUGE appeal! ››› We want to thank everyone who donated to our appeals over spring and summer. Your incredible generosity has helped us raise more than £570,000, which will make a huge difference to even more of our patients. Thanks to your kind donations, we’ll continue to fund essential research to find kinder treatments for children with leukaemia. You have also helped to fund a new DNA sequencing machine, which could identify rare, life-threatening childhood diseases. Thank you.

Your donations

Helping He rb and his fam to fight inf ily ection

Hope for children with rare diseas thanks to es, you How the continues care when our patien ts grow up

If you would like to find out more about our appeals or update your contact details, please call Supporter Services on 020 7239 3131 or email supporter.care@gosh.org

To find out more about the next phase of our redevelopment project, visit gosh.org/redevelopment

Vernon Kay and Tess Daly with GOSH patients at the Topping Out ceremony

“This redevelopment is hugely focused on improving patient and family experience” Importantly, the surgery centre will enable the hospital to treat up to 20 per cent more children and allow parents or carers to stay by their child’s bedside overnight. There will be more room for children to play and eat together and areas for parents to have a break. Improvements such as these are made possible thanks to your generous donations. “This redevelopment is hugely focused on improving patient and family experience,” says Mr Joe Curry, Consultant Neonatal and Paediatric Surgeon. “Every child who has had anaesthetic for an operation, or Joe Curry, Consultant Neonatal an intervention or investigation, will be in and Paediatric Surgeon the safest place possible. They’ll be near to staff and resources that can help to smooth the transition back to normal breathing and consciousness again.” 7

Cover story

Stanley and his family spent Christmas at GOSH as he recovered from a lifethreatening infection. But it’s a Christmas they still remember for all the right reasons.

Taking care of Christmas

Cover story

t might sound strange, but Christmas at Great Ormond Street Hospital (GOSH) was really quite enjoyable,” says Stanley’s mum, Claire, who spent Christmas at GOSH with her little boy in December 2012. “The staff did so much. Some of them dressed up and visited the ward to make a fuss of the children. There were carols and a traditional Christmas dinner – they really went all out to make Christmas as good as possible.” That Christmas, at just four years old, Stanley was in hospital recovering from a lifethreatening infection. “It was a very stressful time for us,” says Claire, “but a very happy time as well. The whole family has lovely memories of Stanley’s unexpected Christmas at GOSH.” Stanley and his family have been coming to the hospital since he was eight weeks old, when he was rushed to GOSH to receive specialist care from the hospital’s multidisciplinary teams. “Stanley has Crouzon syndrome,” says Claire. “The doctors at our local hospital knew nothing about the condition, and didn’t know what to do. GOSH was the best place for his care.” The symptoms for Crouzon syndrome vary, but Stanley’s case was very severe. He had reduced eye coverage that, if left untreated, could have led to blindness. His airway was also obstructed, leaving him unable to breathe

Koala Ward

Neurology, telemetry, craniofacial and neurosurgery

200 craniofacial procedures are performed at GOSH every year

Stanley in hospital with his sister, Harriet

properly. “Stanley “They tried to had one of the worst cases of sleep make it a home apnoea GOSH had from home” seen,” says Claire. “They had to insert a tube up his nose to keep his airway open.” One other affected area was Stanley’s brain: his skull had fused, leading to increased pressure. He also has hydrocephalus (water on the brain). Claire says: “Stanley has had 14 major operations so far, including surgeries where they’ve cracked the skull to reshape his head and make room. Every time he had that surgery he got meningitis caused by bacteria on his scalp, which was sometimes worse than the surgery itself. “Occasionally, Stanley’s need for neurosurgery is very sudden, but if we can plan ahead, he’s given a head wash and some antibiotics beforehand to fight the bacteria.” To help treat his hydrocephalus, Stanley had a shunt inserted, which later became infected and “We’re malfunctioned. “You always have to be constantly prepared,” says Claire, on guard” “Stanley’s been bluelighted in an ambulance about 30 times. We’re constantly on guard.” Stanley’s treatments have meant long-term hospital visits for his family. Thankfully, they have been able to stay in nearby accommodation funded by Great Ormond Street Hospital Children’s Charity’s generous donors. “We › 9

Cover story were put up in a room and fully equipped kitchen,” explains Claire. “It was very comfortable, clean and close by – they tried to make it a home from home. “GOSH tries to keep the family unit together and they make the experience as easy as possible. The charity support is huge for us: the travel and accommodation costs would cripple us otherwise, and we know we’ve got a long road ahead: one operation won’t fix everything.” The family also stayed in hospital accommodation during Christmas, so that they could be with Stanley during the festive period. Claire says: “There was so much going on for the whole family, including presents for all of the children. Stanley’s older sister, Harriet,

Stanley spent Christmas at GOSH

“Christmas at GOSH was a really lovely experience”

dressed up as a nurse in a costume we’d bought for her. The nurses took her under their wing for a day – she still remembers it as one of her favourite times.” Stanley had the tube that helps him to breathe removed in January 2015. He’s now being trialled on a CPAP and BIPAP machine that pushes the air in and out while he’s asleep. If that doesn’t work, it’s likely he’ll need further surgery – a midface advancement, where a surgery team will perform a 15-hour operation to affix a frame to the bones in Stanley’s face. This will gradually pull the bones forward over 10

Research

Protecting childhood memory

Stanley excitedly opens his presents

An exciting breakthrough in epilepsy surgery has been made thanks to a team at Great Ormond Street Hospital (GOSH) and the UCL Institute of Child Health (ICH).

a number of months to open up his airway. Stanley continues to visit GOSH every three months for tests to monitor his condition. Despite their reasons for coming to the hospital, Claire says that Stanley’s care couldn’t be in better hands. “Every time I walk through those doors I breathe a sigh of relief, because I think it’s the best hospital in the world and they can treat his condition. In a strange way it feels like home. I say to people: ‘I’m so glad Stanley’s treated at GOSH, because I don’t know where we’d be without them.’ “To other parents, I’d say just know that you’re in the best hands – that should be a huge relief. Try and throw yourself into the Christmas experience, because the staff will make it memorable. I have no negative memories of that period. Christmas at GOSH was a really lovely experience.”

Donate now! If you would like to make a donation and support more children like Stanley at GOSH during Christmas, please call Supporter Services on 020 or visit gosh.org/donate

7239 3131

round 30 per cent of children with epilepsy have seizures that are resistant to medication. Surgery to remove brain tissue that causes seizures can be an effective treatment, but in some adults, removing important tissue – particularly in the temporal lobe, an area known to be important for supporting memory – has led to memory loss. There were concerns that the same treatment could have a similar effect on children. But the research conducted by the GOSH and ICH team – the first to examine children’s memory development in the longterm – suggests that a child’s memory responds differently to the surgery. The team looked at 42 epilepsy patients

Talking to…

who’d had surgery on their temporal lobe in childhood. Those patients were re-examined as young adults on average nine years later. They were compared against 11 patients with epilepsy who did not have surgery. The team found that seizures stopped in 86 per cent of the children who’d had surgery, and that there were significant improvements to memory overall, which included recollecting events and facts. There were also other interesting discoveries, including long-term improvements in IQ. The best memory outcomes were seen in children who had the least amount of brain tissue removed. Ultimately, surgery of this kind can stop epileptic seizures, while not only protecting but improving the development of a child’s memory. Professor Torsten Baldeweg looking at a brain scan

For more information about research projects and breakthroughs funded by Great Ormond Street Hospital Children’s Charity at GOSH, visit gosh.org/research

Torsten Baldeweg, Professor of Cognitive Neuroscience at the ICH and study lead Prior to this research, we had little understanding of the impact the surgery had on long-term memory outcome when the procedure took place in childhood. Our findings show that surgery can make an important difference, but also that it is vitally important to carefully identify the area of the temporal lobe to be operated on. “In the future, better pre-operative diagnostics using improved imaging will hold the key to reducing seizures and maximising memory outcome for children who have this surgery.”

How does it all add up? How the income was raised

Tim Johnson, Chief Executive, Great Ormond Street Hospital Children’s Charity

Other* £4.7 million

Legacies £22.0 million

Investments £2.3 million

Property £6.5 million

Trading £2.1 million

*Other includes grants, auctions, tickets and sponsorship.

Total income raised year by year £63.9 million

£66.3 million

£70.1 million

£74.5 million

Redevelopment -£0.4 million

Medical equipment and capital schemes £3.7 million

£81 million 2019/20

2017/18 2014/15

Total: £17.3 million

What we need to raise next

2018/19

2013/14

Talking to…

Welfare and clinical development £6.4 million

Donations £48.7 million

2012/13

A copy of our annual report can be downloaded from gosh.org/about-us

Accommodation and other £1.2 million

Research £6.4 million

2010/11

any of the charity’s fundraising activities helped us to reach this phenomenal achievement. The funds kindly given to us from those leaving gifts in their Wills far exceeded any previous year, reaching £22 million. There were also increased donations from our regular givers. In 2014/15, the funds spent on the hospital’s redevelopment varied significantly compared to previous years. We’re unable to redevelop the entire hospital in one go because the building work would completely take over and there would be nowhere to treat our sick patients. As a result, the projects are phased over time, which means that investment is needed at certain points. In order for us to make an investment like the £83.4 million we committed in 2013/14, we need to allow our reserves to build up over time. The money we provide to our other key fundraising areas – research, equipment, and welfare – continues to increase. We are only able to do so thanks to your generosity.

How the income was spent

Total: £81 million

With your help, our fundraising reached £81 million in 2014/15, which will help make a huge difference to the patients, family and staff at Great Ormond Street Hospital (GOSH). This was another record amount, up by 8.7 per cent from the previous year.

2011/12

Breaking fundraising records

How does it all add up?

2016/17 2015/16

£500 million

£100 million £100 million £100 million £100 million £100 million

As Chief Executive, nothing excites me more than seeing the extraordinary difference we can make to the lives of our patients. This is something we can only achieve thanks to our wonderful donors, so thank you so much for your generous support. “But I know that we can do more. As medicine advances and creates new possibilities, we can provide hope for so many more children. We must ensure that we can enable the hospital to continue to provide the world-class care that our patients urgently need. “That’s why we’ve set ourselves a new ambition with our five-year strategy. The funds we raise over this next five-year period will be put towards the redevelopment of the hospital, more groundbreaking research and greater support for our patients and families. We’ll also continue to provide funding for the most up-to-date equipment to treat seriously ill patients. “By raising more money than ever before we’ll be able to help more than ever before. You are absolutely crucial to this next phase. With your continued generosity and support I know that we can reach our ambitious goal. Thank you.” Please use the Christmas stocking you received with this magazine to send a message of goodwill to the children and staff at the hospital this Christmas. Thank you!

Guest editor interview

Under the microscope

Q I like meeting children and their families, Q It’s quite expensive – it costs about What do you like most about your job?

seeing them in clinic and then seeing them for surgery. I like the fact that a small operation can often make a child better. I enjoy seeing them again afterwards every few months. I really like trying to make children feel better.

What equipment do you use to perform surgery?

There is quite a lot of equipment. One of the most important things we use is an operating microscope. It’s a bit bigger than the microscopes you might have at school, but it’s quite similar in many respects. The brain and spine of a child is very small, and so the microscope will help us to see it better, bigger, and with more light.

Talking to… “Hi, my name’s Sophie, I’m the guest editor for Lifeline. I’m a patient at Great Ormond Street Hospital (GOSH) where I had surgery to remove my brain tumour. I’m talking to my surgeon, Mr Kristian Aquilina, about what he does at the hospital and what equipment he uses.”

Q I’m a paediatric neurosurgeon, which What is your job?

means that I look after children who have problems with their brain or spine, and we try to make them better by doing an operation.

Q There are quite a large number of conditions What different conditions do you treat?

we treat. One of the most common things is when children come with a lot of water on the brain, so we put in little tubes to drain the water away and make them better. We also look after children who have little lumps on the brain. We treat children who have problems with their spine. Some of them can’t walk, and we 14

do an operation to help them walk better. Some others may have little lumps on their spine and we take them out.

Q We do some scans, which show us where What do you do during an operation?

to go and what to do. Often, we have to make a tiny opening in the head or the spine, and find where the problem is. Very slowly and carefully, we’ll take any lumps out.

“I like the fact that a small operation can often make a child better”

Tracey, Sophie’s mum I went into Sophie’s bedroom and saw that she looked awake, but didn’t respond when I spoke to her. She was extremely pale and we really thought we’d lost her. As we called an ambulance, she started to twitch and jerk. This affected her face and one side of her body.

How much does a new microscope cost?

£143,000. As you can imagine, it’s not something you can just go and buy. We’re very lucky to have the charity support to help us raise such large amounts of money, as we urgently need to replace old equipment like the current microscope we are using.

What do you like most about GOSH at Christmas?

GOSH is very busy at Christmas – there are lots of things going on. People sing Christmas carols inside and outside the hospital. And, of course, Santa comes to give presents to all the children. It’s Watch a great time at it online at Christmastime. gosh.org/ lifeline

“I travelled with her to Queen’s Hospital in Romford, where the doctors found a tumour on the right hand side of her brain. After being referred to GOSH, the team there agreed that watching and waiting was not an option. “We were told Sophie would be left with a weakness down the left side of her body. I was extremely reluctant to sign the consent form for the operation as I feared what state my little girl would be in after the surgery. Her Consultant Neurosurgeon, Mr Kristian Aquilina, promised he would do his very best and take good care of her. “Sophie was in surgery for five hours. The tumour came away easily and completely and resembled normal brain tissue. It was so rare that it had never been seen at GOSH before. “Sophie was back at school just three weeks after her operation. We now only need to go for scans at GOSH twice a year. Through the brilliance of her surgeon and the location of the tumour in her brain, she hasn’t experienced the left side weakness we were told was a certainty.”

True story

Despite five years of investigations, Dylan’s condition remains undiagnosed. His mum Danielle tells us their story.

Into the unknown

t Danielle’s 20-week scan, she was told that her son Dylan’s organs were reversed. Seven weeks later, a growth scan revealed that he wasn’t growing – in fact, he was getting smaller. Although Danielle and her husband were told that Dylan had a genetic condition, a diagnosis would not be possible until he was born – or so they thought. When Dylan arrived he didn’t require any special care. “He was this perfect, tiny, little thing,” says Danielle. “He didn’t cry and he didn’t murmur – until he reached eight weeks and he had his first seizure. Then came ear and throat infections, and horrendous apnoea attacks, when he would stop breathing.” After several trips to their GP, nearby hospitals and A & E, Dylan was admitted to Great Ormond Street Hospital (GOSH). “GOSH was the only place that could help us,” says Danielle. Dylan was seen by a number of GOSH’s specialist teams, including Neurology, Orthopaedics, Gastroenterology, Immunology, Infectious Diseases and Respiratory. “Dylan has a very rare genetic disorder,” explains Danielle, “which is undiagnosed, or syndrome without a name (SWAN). His condition means that he’s stuck in the body and mind of a baby. He’s developed up to about nine months in almost five years.”

“GOSH was the only place that could help us”

Dylan’s sleep apnoea means that he can stop breathing day or night without warning. “Despite full investigations, no one knows why it happens,” says Danielle. “He’ll go blue and stiff, need resuscitating and then oxygen. His immune system is suppressed – which affects his body’s ability to fight infection – he has arthritis in his knee, and he’s become steroid-dependent. “His condition is labelled as ‘life-limiting’, firstly because of his breathing problems, but also because doctors simply don’t know how or if he will grow up. There’s no other child like him.” Although Dylan has a variety of symptoms, his care is led by Dr Paul Brogan from the

Dylan with his mum Danielle

Rheumatology department, as Dylan’s arthritis was diagnosed as his worst problem. “Dr Brogan is very approachable and will point us in the right direction if he can’t help” says Danielle. “He’s fantastic, as are the team of clinical nurse specialists who look after us when we’re at the hospital.” Danielle is around 24/7 to care for Dylan, but she also has incredible support from her husband and their nine-year-old daughter, Scarlett, who Dylan absolutely adores. “She’s his tonic,” says Danielle, “but it’s becoming increasingly difficult for us to socialise as a family. The age gap between them is effectively widening every day. I can’t take him to anything like soft play because his immune system wouldn’t cope. So we mainly just go and eat, because then he and Scarlett both get to do something.” ›

Donate now! If you would like to make a donation, please call Supporter Services on

020 7239 3131 or visit gosh.org/donate 17

Fantastic fundraisers

True story Despite everything that Dylan has been through, Danielle says that he remains incredibly resilient: “He’ll come out of recovery and within 10 minutes he’ll be sitting on the bed with Daddy watching Micky Mouse and eating Hula Hoops. Mickey Mouse is the only thing he recognises. That’s all he wants. And for mummy to make him well with his medicine.

“We couldn’t ask for better care”

“We’ve been given a walking frame, but Dylan refuses to use it – he’s very strong-willed! As long as he’s here with us and with his pain being controlled, that’s all that matters. I don’t care if Dylan doesn’t know his alphabet, and I don’t care if he’s not going to be a doctor or an accountant. I’ll carry him around forever if I have to, and I’ll do whatever I have to do to look after him. Because I love him.” The past five years have been a long road for Dylan and his family: “I thought we’d just be in and out of hospital – I had no idea that it would become such a hard journey,” says Danielle.

Rheumatology Arthritis and other inflammatory conditions

10,000 patients are seen by the Rheumatology department every year

“But GOSH is obviously the best place for us. We couldn’t ask for better care. Now the hospital is bringing in a nurse specifically to deal with undiagnosed children, which is amazing. We’re hoping to be involved, but it’s the first position of its kind in the UK so it’ll take some time to establish.”

“Dylan’s our little Peter Pan”

Danielle may not know what the future holds in terms of a diagnosis, but Dylan will always be the family’s priority. “He comes first,” says Danielle. “He could take his last breath at any moment, so we have to cherish every second. It’s the love of our family that has got him this far – I’ve been told that by several doctors. He’s our little Peter Pan – he doesn’t grow up.” 18

A BIG THANK YOU to everyone who has donated, spread the word, baked a cake, run a race, or done anything in aid of Great Ormond Street Hospital Children’s Charity. We can’t include all of you, but here are some of the highlights, plus some upcoming fundraising events and ideas.

Trish dives into fundraising for GOSH Trish Wagstaff is an 83-year-old grandma from Appleton, Warrington, known for taking on daredevil challenges to raise money for charity. In August, she took part in a skydive to raise funds for a new heart-lung bypass machine at Great Ormond Street Hospital (GOSH). ››› “Usually, I do something mad each year

for charity,” says Trish. “Last year, I did the high zipwire in Wales, which is the longest one in Europe, and raised £11,500.” Trish first decided to take on a “mad” challenge seven years ago, shortly after her

The most exciting thing about Christmas is… being at home! Piettra, 15

Trish presents her cheque

husband, Peter, who had been a Major in the Royal Scots, passed away. She’s raised hundreds of thousands of pounds for charities since then, including Great Ormond Street Hospital Children’s Charity. Elena at an eventsupported she organised “I’ve GOSH since 1992. This year, , which raised £1,300 I chose a skydive. I don’t mind heights at all.” Trish raised more than £15,000 with her skydive, which will make a massive difference to the patients and families at GOSH. She has also tried paragliding and once went swimming with sharks! Her friends are always asking Trish what she’s going to do next, and she has ideas for other adventurous activities, including wingwalking. Trish has volunteered for her local hospice for more than 25 years. In December 2012, she was honoured for her services to charity with a British Empire Medal, which she said was “absolutely incredible”. When she’s not jumping out of planes for charity, Trish sings in an a cappella group – Harmony InSpires – and for the church choir. She also runs a village club, plays table tennis and enjoys gardening.

“Usually, I do something mad each year for charity” For more information on our range of challenge events, visit gosh.org/challenges

Fantastic fundraisers

Becoming a volunteer ambassador Our volunteer ambassadors represent the charity and the hospital in their local communities by giving talks and raising awareness of the needs of the hospital. Mary tells us why she joined our team earlier this year. ››› “At our three-month scan,

my husband and I were told that our son, Theo, had a minor heart defect and an abdominal wall defect: his bowel, liver and part of his stomach had developed inside the umbilical cord and not in his abdomen. We were advised we only had a 60 per cent chance of being able to take our baby boy home. “When he was born, Theo was immediately transferred to Great

Mary and her husband with son Theo

Fantastic fundraisers Ormond Street Hospital (GOSH). After almost eight weeks as an inpatient and 10 procedures, we got to take him home! “Words can’t describe how lucky my husband and I feel to have Theo under the care of such dedicated and experienced practitioners. We recently celebrated his first birthday by running the charity’s RBC Race for Kids as a family.

“What’s great about the ambassador role is that it can be what you make of it”

“Becoming an ambassador seemed like the most fitting way to give back to GOSH, which had given us so much! I’ve promoted the charity, talked about my experience and supported runners at the London Marathon. What’s great about the ambassador role is that it can be what you make of it and it’s flexible. “GOSH is a very special place. While no parent wants to see their child in hospital, if they have to be somewhere, I wouldn’t want my child to be anywhere else. I’m really proud to be an ambassador – it truly is so rewarding and the best way to say thank you.”

To find out how you can get involved, call 020 7239 3066 or visit gosh.org/ambassador

Decorate and donate! Support our patients this Christmas by getting creative. ››› Our fantastic festive tree poster is a great way to send Christmas messages and raise money to support the work of Great Ormond Street Hospital. Order your fantastic festive tree poster and sticker baubles, and place it somewhere where everyone can see it. Then, ask family, friends and colleagues to write a festive message or decorate a sticker for a suggested donation of £1 or £2. With your support, the hospital can provide the best possible experience for those patients unable to go home this Christmas.

To order your poster pack, call 020 7239 3207, visit gosh.org/decorate or email decorate@gosh.org

Emma’s legacy

Emma at 15 days old

Barbara Doherty shares why her daughter’s short life inspired a lasting dedication to help future generations of sick children at Great Ormond Street Hospital (GOSH). ››› “Emma Mary was born on 4 January

1979. At 15 days old she collapsed and turned blue. She was taken to our local hospital, and then to GOSH, where she was diagnosed with transposition of the great blood vessels (a heart defect). “The GOSH staff were superb, kind and considerate. I stayed in the small parent’s flat nearby and went every morning and evening to St Christopher’s Chapel (the hospital chapel). “Emma was very ill and had many tests, but experienced fits. She was christened on the ward by the chaplain. “Sadly, Emma died at 20 days old. The nurses took away all the tubes and the ECG machine, and dressed her in a pink dress. I held her as she died. The staff were so caring and gave us so much support. “Emma’s life and death changed my life – as a former nurse, I understood the technicalities, but now had to deal with my own bereavement. “I became involved in fundraising for Helen House Children’s Hospice in Oxford, the world’s first children’s hospice. I then joined our local hospice, Isabel Hospice. I’m now

The most exciting thing about Christmas is… it has to be presents!

Arnav, 14

President and was awarded an MBE in 2008 for voluntary service. “My husband Neil and I, and our three other children, will always support GOSH. Our youngest daughter, Mary, born after Emma’s death, feels a strong connection to her and ran a half-marathon in her memory. “Neil and I have also included a gift to Great Ormond Street Hospital Children’s Charity in our Wills. This is Emma’s legacy – she and GOSH enriched our lives. We were there a short time, but it is written on our hearts.” If you’d like to find out more about leaving a gift in your Will, or for details of our free Will service, please contact Judy Anderson at legacy@gosh.org or 020 7239 3205. If you wish to make a donation in memory of someone dear to you, please contact our Tribute team on 020 7239 3002.

Thanks for your feedback

Patient Herb

››› Thank you for the fantastic response to this year’s Readers’ Survey. Your opinions will help us ensure you are properly informed about how your donations impact the hospital. We will also use the information to update our records accordingly. Congratulations to Mrs Pam Bennett, who won the prize draw of a night’s stay at the luxurious Marylebone Hotel!

Get involved If you’d like to get involved with our fundraising events, why not try one of these?

Bad Hair Day 12 February 2016 Join hundreds of our supporters across the UK and wear bad hair for the day! Make a difference by fundraising with a wacky hairdo. For further details, visit gosh.org/badhairday

London Santa Dash 6 December 2015 Our brand-new festive fun run is taking place at London’s Clapham Common. Ditch the sleigh and dash away on a 5k or 10k route to raise money for the hospital’s redevelopment. Visit londonsantadash.co.uk for details.

Annual memorial service 30 April 2016 The next annual memorial service will take place on Saturday 30 April 2016 at 2.30pm in St George The Martyr Church, Queens Square, London. This is a multi-faith service of thanksgiving and remembrance for all families whose child has been cared for by GOSH. To contact our Chaplaincy team, please call 020 7813 8232.

Christmas Carol Concert 8 December 2015 Begin the festive season with our 16th annual Christmas Carol Concert at St Paul’s Church, Knightsbridge, London at 6.30pm. Organised by Great Ormond Street Hospital Children’s Charity and sponsored by Trailfinders, the event will be followed by a luxurious champagne and canapé reception at The Berkeley hotel in London at 7.30pm, which includes a silent auction and entertainment. For tickets, call 020 7239 3272 or email carol.concert@gosh.org

RBC Race for the Kids May 2016 Sign up to our 5k family fun run in London! Everyone is invited to take part. Register your interest at raceforthekids.co.uk

in supporting Great Ormond Street Hospital Children’s Charity this festive season

Thanks to JM Barrie’s amazing gift to Great Ormond Street Hospital in 1929, every performance of Peter Pan benefits the hospital, so enjoy a great family night out and support us when you go and see one of the many shows opening for Christmas, whether it’s a pantomime or musical! 17 November–31 January 2016 Wendy & Peter Pan, Royal Shakespeare Theatre, Stratford-upon-Avon www.rsc.org.uk/whats-on/ wendy-and-peter-pan/ 24–25 November Peter Pan (Musical), Dearne Playhouse, Rotherham, South Yorkshire www.dearneplayhouse.co.uk 28 November–3 January Peter Pan (Pantomime), His Majesty’s Theatre, Aberdeen www.aberdeenperformingarts.com 2–6 December Peter Pan (Pantomime), Winter Gardens, Margate, Kent www.margatewintergardens.co.uk/ event/peter-pan-pantomime 4 December–31 January Peter Pan Goes Wrong, Apollo Theatre, London www.theplaythatgoeswrong.com/ peter-pan-goes-wrong 2–27 December 2015 Peter Pan (Pantomime), Middleton Arena, Manchester www.link4life.org/whats-on/peter-pan 4 December–3 January Peter Pan (Pantomime), St Albans Arena, Hertfordshire www.alban-arena.co.uk/ events/peter-pan

The Snow Ball 15–16 December 2015 Friends members and their family are invited to attend our annual children’s Christmas party, The Snow Ball, at the Royal National Hotel, London. There will be activities and entertainment for all ages, with a visit from Santa! To reserve your place, call 020 7239 3004 or email christmas.party@gosh.org

Join Peter Pan and Wendy

Find out about more exciting challenge events online Visit: gosh.org/challenges Call: 020 7239 3164 Email: challenges@gosh.org

4 December– 3 January Peter Pan (Pantomime), Lighthouse Theatre, Poole, Dorset www.lighthousepoole.co.uk/ peter-pan

4–5 December Peter Pan, Brixham Theatre, Brixham, Devon www.ents24.com/brixham-events/ brixham-theatre 8 December–10 January Peter Pan (Pantomime), Eden Court Theatre, Inverness www.eden-court.co.uk/whats-on/ shows/peter-pan 10–31 December 2015 Peter Pan (Pantomime), South Holland Centre, Spalding, Lincolnshire www.southhollandcentre.co.uk/ whats-on/view/peter-pan 10 December–11 January Peter Pan (Pantomime), Devonshire Park Theatre, Eastbourne, East Sussex www.eastbournetheatres.co.uk/ events/peter-pan 11–24 December 2015 Peter Pan (Pantomime), Lincoln Performing Arts Centre, Lincoln, Lincolnshire www.lpac.co.uk 11 December–3 January Peter Pan (Pantomime), Wycombe Swan Theatre, Buckinghamshire www.wycombeswan.co.uk 12 December–24 January Peter Pan (Pantomime), The Grand Theatre, Wolverhampton www.grandtheatre.co.uk

12 December–3 January Peter Pan (Pantomime), SECC, Glasgow www.pantomime.com/ venues/glasgow 14 December–3 January Peter Pan (Pantomime), The Spa Theatre, Bridlington, East Riding www.spabridtickets.com 15 December–3 January Peter Pan (Pantomime), Alexandra Theatre, Bognor Regis, W Sussex www.alexandratheatre.co.uk 17–24 December 2015 Peter Pan and the Revenge of Captain Hook, The Playhouse Theatre, Cheltenham, Gloucestershire www.cheltplayhouse.org.uk 22–30 January 2016 Peter Pan (Pantomime), King’s Hall, Ikley, West Yorkshire www.ents24.com/ilkley-events/kingshall-and-winter-garden 4–5 February 2016 Peter Pan (Musical), Adrian Mann Theatre, Epsom, Surrey 20–21 February 2016 Peter Pan (Pantomime), The Brindley Theatre, Runcorn, Cheshire www.liverpooltheatres.com/ brindley.htm#peterpan

There’s still time to visit our online shop for a fabulous range of great value gifts and essentials. www.gosh.org/shop

Christmas cards

Jessica’s Christmas tree £4.50 Other designs from £4.25

Exclusive to GOSH

Happy g! shoppin

Wendy Bear £10 Child and adult hoodies from £20 Being @ GOSH bag £7.50

Gifts for the family

Biscuits £8.99 Me and my Grandpa £5.99 Crackers £9.50

100 per cent of the profits from all of your Christmas purchases go to the hospital, so this year, by choosing to buy your cards and gifts from our shop, you are helping to make GOSH more extraordinary every day.