1492683780 Evelina London News http://www.supportevelina.org.uk Evelina London News en info@supportevelina.org.uk Copyright 2017 2017-04-20T10:23:00+00:00 Running for Evelina London - Jon and Jamie’s story http://www.supportevelina.org.uk/news/fundraising-tips-from-a-star-supporter http://www.supportevelina.org.uk/news/fundraising-tips-from-a-star-supporter#When:10:23:00Z Jon and Jamie are postmen from Dartford, Kent. They are running the 2017 London Marathon for Evelina London Children's Hospital. It will be Jon’s second time running for our special hospital, but Jamie's first. Jon shares with us his moving story that has led him to support Evelina London.

‘My daughter Amalia Eponine was treated at Evelina London in 2014 when she was 5 1/2months old. She had a very rare, life-threatening condition called encephalitis HSV1, which causes inflammation of the brain, and which almost took her life. She was put on a series of medications and was closely monitored on the high dependency unit while a correct diagnosis was sought.

‘Amalia is now three years old and is a very happy and active little girl. However due to the illness Amalia incurred a brain injury which has seriously affected her ability to speak and her development to the extent that we don't know how she will be in the future. Amalia also suffers from epilepsy as a result of the encephalitis and is still under the care of Evelina London.

‘We are so lucky that this hospital was and is here for us, as are many other families. Since our experience my family and friends and myself have tried to raise awareness and as much money as possible to help Evelina London carry on their amazing care and work. Many of you like us probably weren’t aware of Evelina London until a life changing experience, but we are so fortunate that they were there for us at the worst moment of our lives. It's such a special place and doesn't really feel like a hospital. We just hope we can repay them by raising as much as possible.’

We’re wishing Jon and Jamie all the best for their upcoming marathon – you can sponsor them here.  Do you have your own place in the London Marathon? Why not join our team and help raise funds for Evelina London.

Running for Evelina London - Tamsin’s story http://www.supportevelina.org.uk/news/running-for-evelina-london-tamsins-story http://www.supportevelina.org.uk/news/running-for-evelina-london-tamsins-story#When:13:30:00Z Tamsin’s daughter Charlotte has had ongoing treatment in the Pediatric Rheumatology Department at Evelina London for Juvenile Idiopathic Arthritis. Tamsin ran the Royal Parks Half Marathon on 11 October 2015, and shares with us why she is running the London Marathon.

‘One of the reasons I want to fundraise for the Paediatric Rheumatology Department is because the service they provide is fantastic. Eunice is our specialist nurse and whenever we have any worries we can email or call her and talk it through. She listens and provides great advice and support. If necessary she can squeeze us into a clinic at short notice to get Charlotte seen and it makes such a huge difference to Charlotte's care and to our stress levels as parents. She seems to work very long hours!

'When we visit the Clinic, we can see an Opthalmologist, a Physiotherapist, and a Rheumatologist along with a Specialist Nurse, all at the one appointment which is a huge help in terms of lost days at school and work.

‘Over the last 18 months Charlotte has suffered with a lot of muscle pain, and it has been difficult to help her manage it. Eunice has been on the end of the phone for us, and has helped with prescribing pain relief and offering advice. Hopefully, Charlotte is over this now as for the last few weeks she has been pain free for the first time in a very long time. I can't tell you how much we appreciate this support.'

Amazing fundraising

‘So as far as my marathon running and fundraising is concerned, I organised a quiz night in October – we had over 80 people join us for a great evening, with a raffle, which raised over £1000 – one of my colleagues at work was the quiz master. I did a cake sale at work which raised over £250. Recently Charlotte and her friend organised a book sale and raised a whopping £150. I'm doing a sweepstake for my finish time at work which has raised over £80. I've also had lots of very generous sponsorship and I've raised well over the £2500 target.'

We’re wishing Tamsin all the best for her upcoming marathon – you can sponsor her here. Do you have your own place in the London Marathon? Why not join our team and help raise funds for Evelina London.

Running for Evelina London - Rachel’s story http://www.supportevelina.org.uk/news/running-for-evelina-london-rachels-story http://www.supportevelina.org.uk/news/running-for-evelina-london-rachels-story#When:13:26:00Z Evelina London staff member Rachel Carling explains how her London Marathon training and fundraising is going.

#RunRachelRun is my campaign to raise money for Evelina London by running the London Marathon. As a Consultant Metabolic Biochemist and Director of Newborn Screening, I have worked closely with the Paediatric Metabolic Team at Evelina London for the last eight years so this charity is close to my heart.

‘A subtle but definite emphasis should be placed on ‘running’ because my goal is to do exactly that: keep running. As with any challenge my approach is to tackle this head on and with just a few weeks to go until the big day, I have thrown myself into both fundraising and training. It is fair to say that one is considerably harder than the other and there is probably no need to mention that heart-sinking feeling I got when I realised the distances on my training plan were in miles not kilometres!

Innovative Fundraising

‘In addition to the training, I have also been scheming up fundraising initiatives. These include street collections at Christmas Fairs, a raffle, two Boot Camps, a non-uniform day at my daughter’s school and a Cup ‘n’ Cake sale at Swan Gymnastics, Stevenage.

‘A friend of mine baked and donated over 100 cupcakes for the cake sale. Starbucks, County Hall donated the cups and the Letchworth branch of Sainsbury’s provided a supply of cake boxes. Alice and I set out our stall and had barely got the last cake on the table before the hungry hoards descended; we sold 80% of the cakes in less than 30 minutes and raised a total of £157.

‘When I heard about Get Colourful, I asked my daughter’s school if they could support it. They did a great job. I managed to get Willows Farm at London Colney to donate tickets so every child got entered into a prize draw on the day which added to the proceeds.

‘Having only ever completed a half marathon prior to this, provided all goes to plan I realised that between now and 23 April I should be clocking up a personal best for distance run on a weekly basis. This gives me a small smile each time. So far I am up to 20 miles so I just need to add another 6.2 miles.

‘I am convinced it is just like learning to annotate an organic acid chromatogram – which is part of my work as a biochemist. At first it seems completely impossible, and can take you a whole day. Before you know it, it’s second nature!’

We’re wishing Rachel all the best for her upcoming marathon – you can sponsor her here.  Do you have your own place in the London Marathon? Why not join our team and help raise funds for Evelina London.

The Twinvincibles! http://www.supportevelina.org.uk/news/the-twinvincibles http://www.supportevelina.org.uk/news/the-twinvincibles#When:15:28:00Z An amazing family are taking on several challenges to raise money for Evelina London as a thank you for the care given to their disabled twins.

Georgie and James Melville-Ross have spent more time at Evelina London than many of the staff. Their 13-year-old twins – Alice and Tommy – were born at St Thomas’ four months early, at just 24 weeks. Both children were critically ill when they were born and were only given a one in five chance of surviving. Alice suffered four heart attacks within hours of birth and within days Tommy almost died from a haemorrhage in his lungs. They were cared for in the Neonatal Unit for nine long months before being allowed home.

The twins have severe quadriplegic cerebral palsy with dystonia. Cerebral palsy is caused by a problem in the parts of the brain responsible for controlling muscles – and this affects the whole of their bodies, giving them uncontrolled muscle contractions. They have been supported by Evelina London since the age of two under Dr Jean-Pierre Lin and his team at The Complex Motor Disorder Service (CMDS).  

James has written a book about their lives, an honest account of life with disabled children. He describes ‘Two for Joy’, written on his commute to work, as ‘a diary to make sense of the whirlwind’. 
The whirlwind for both James and Georgie is non-stop, a life full of caring for the twins - and their younger sister India – and frequent hospital visits.

Intensive care and emergency surgery

Both children had deep brain stimulator surgery back in 2008 and 2009 – this surgery implants electrodes into the brain to deliver electrical currents to help reduce the involuntary muscle spasms. Tommy was a pioneer - the smallest child and one of the youngest - to receive a new, rechargeable device. Sadly, Tommy’s deep brain stimulator became infected in November 2012 and the whole system had to be removed.  

‘The knock-on effect of not having the stimulator was that his body went in to shock and his dystonia spiralled out of control,’ Georgie recalls. He had to be hospitalised as his organs started to shut down and he spent several months in intensive care. He had emergency surgery in December 2012 as intensive care were not able to control the extreme state of his dystonia through drugs and he was going to die.
‘The tireless and dedicated work of Dr Lin and the CMDS team together with PICU [the Paediatric Intensive Care Unit] and the Savannah nurses saved my son's life and very gradually Tommy started to calm and his body repaired itself,’ Georgie says.

Keeping promises and taking on challenges

Tommy finally left Savannah ward in July 2013. ‘We have spent the last three years gradually rebuilding our son,’ Georgie says. ‘I made a promise to Tommy when we left the hospital that I would run a marathon to say thank you to the incredible people who work so tirelessly to help children like mine. I want to show maximum respect to my twins who I am humbled by every day for all that they go through with their bodies but still manage to laugh and smile.’  

Georgie is running the London Marathon with her sister Edwina, juggling her training with splitting her time between her children. Since the new year, she’s spent a number of weeks with Alice in Evelina London being treated for various complications associated with her increased dystonia as well as a chest infection and strain of flu.
The sisters recently completed the Silverstone Half Marathon in an amazing time of just over two hours - and running isn’t the only challenge the family are taking on this year. 

‘James promised Tommy he would take him up a mountain if he survived after months of windowless, airless hours spent in PICU,’ Georgie says. So to keep that promise, the whole family –the twins in their wheelchairs, plus India, godparents and other family members – will be climbing Pen y Fan, the highest mountain in southern Britain in May.

Then James is climbing Mont Blanc with his brother, sister and brother-in-law in June and the family is entering The Superhero Triathlon in August as a family.

‘We are just an ordinary family but with extraordinary children and I want people to understand more about dystonia and how it affects and impacts children like ours,’ says Georgie. ‘Without the extensive input of Dr Lin's team, I'm not sure where we would be now.’
Inspired by Georgie’s story? You can sponsor the family here or find out how you can take on your own challenge to support Evelina London

Surrey County Cricket Club: stumping up for a fourth year! http://www.supportevelina.org.uk/news/surrey-county-cricket-club-stumping-up-for-a-fourth-year http://www.supportevelina.org.uk/news/surrey-county-cricket-club-stumping-up-for-a-fourth-year#When:12:29:00Z We’re delighted to partner with Surrey CCC again – so far they’ve raised more than £150,000 for Evelina London!

Surrey’s support has made a massive difference over the years, helping us to fund research, equipment and better care. Thanks to them, a team of young transplant patients were able to compete in the 2016 Transplant Games.

At the games, children and teenagers compete in sports including running, swimming, squash and archery. It costs £900 per person on average to take part in the Games, so donations are vital for removing any additional financial burden for families. Spending time with other families and staff in an environment outside of the hospital provides children, parents and families with much-needed support, friendship and an opportunity to relax.

Captain Gareth Batty’s personal connection

The Surrey Captain’s daughter Isabella was born at St Thomas’ in 2016 with a heart condition. She was transferred to Evelina London Children’s Hospital, right next to St Thomas’, has made a full recovery, and is now a healthy baby.

‘It was a tough few weeks and months – we were braced for the worst,’ Gareth says now. ‘But Isabella had a great outcome – the care she received was brilliant. The staff are out of this world. We are so grateful.’

Gareth Batty with a patient at Evelina London

2017 is Gareth Batty’s Testimonial Year and he will be holding a number of events that the hospital will benefit them – and he’s also facing one of his biggest fears!

Gareth is absolutely terrified of heights but has agreed to abseil from the roof of St Thomas’ Hospital on 12 May on one condition: that supporters and friends sponsor him to reach £10,000.

You can support his challenge and help him over the edge here! We’re also looking for lots of volunteers to help collect donations at T20 and international matches throughout the summer – come and get involved!

Lead photo: Gareth Batty and the players on a visit to Evelina London in 2014.

Running for Charlotte - Dan’s story http://www.supportevelina.org.uk/news/running-for-charlotte-dans-story http://www.supportevelina.org.uk/news/running-for-charlotte-dans-story#When:13:53:00Z Dan Newman, from Folkestone in Kent, tells us why he’s running the Brighton Marathon in April

‘My niece Charlotte Newman has been in and out of Evelina London ever since she was born. She was born with a hole in her heart, as well as an extra digit on each hand and foot, and has also had numerous respiratory issues which have caused her to be admitted into the hospital for surgeries and operations.

‘For my family, Evelina London has been a godsend. Without their awesome care, there is a very real possibility that Charlotte wouldn’t be with us today, still fighting and coming on in leaps and bounds.

‘Not only have they taken great care of Charlotte but they have also helped my cousin Scot (Charlotte’s Dad) and Auntie Karen (Charlotte’s Nan), while Charlotte has been in hospital for more lengthy stays. They helped get them accommodation near the hospital so that they are able to stay nearby. The care has been second to none - and she also got to meet CBeebies’ Dr Ranj!’

Charlotte with CBeebies' Dr Ranj!

Giving back

‘In supporting the hospital by running the Brighton Marathon, I am helping to give at least something back for what Evelina London has done for Charlotte. I hope it will help continue the amazing work, and help save other children’s lives.

‘I was inspired to run the Brighton Marathon as I ran it last year. I absolutely loved the atmosphere -the support from the people of Brighton was amazing, I’ve never experienced anything like it. The people calling your name as you run past and giving out jelly babies and bananas left me in awe.

‘My time wasn’t great last year – 4 hours and 17 minutes - and I was really disappointed. I soon realised at about mile 18 I had seriously underestimated the distance and hadn’t put in anywhere near enough training. So this year my goal is to go under 3 hours and 5 mins, which would give me a good for age entry for the London Marathon, and hopefully qualification for the Boston Marathon.

‘My training this year has been so much better. I am a Steward working on-board P&O Ferries and live on-board for one week which has made training a little bit more difficult as I have to do half my training on a treadmill at sea, and I find treadmill running exceptionally boring!

‘But I’m already doing long runs of at least 18 miles and my personal bests in shorter distance races have also dramatically improved. I took over 15 mins off my best half marathon time of 1:26:51 at the Windsor Winter Half Marathon. Hopefully that will be fast enough to allow me to start with the elites at Brighton.’

World-class care

‘As a father to three of my own children, one who is still under a year, it is really reassuring knowing that – God forbid, should we ever need it - there are places such as Evelina London giving world-class care and saving lives.

‘I believe it is important to support the hospital in this way, as it relies heavily on donations and support to continue and even improve their great care, through buying new equipment, carrying out research and maintaining facilities.’

We’re wishing Dan all the best for Brighton – you can sponsor him here. And if you know someone who has their own place in an event like the Brighton or London Marathon, who can fundraise for Evelina London, please call us on 020 7848 4701 or email info@supportevelina.org.uk.

Are you a keen runner? Why not sign up to the Royal Parks Foundation Half Marathon 2017 and help raise funds for Evelina London.

Main image: Charlotte at Evelina London / Dan under the Olympic Rings.

Support Evelina London at a book signing event http://www.supportevelina.org.uk/news/support-evelina-london-at-a-book-signing-event http://www.supportevelina.org.uk/news/support-evelina-london-at-a-book-signing-event#When:13:02:00Z You can now support Evelina London by purchasing a copy of The Warriors of Genesis, by former hospital registrar Dr Adrian Li, at WHSmith in St Thomas’ Hospital.

Adrian balances life as both a doctor and an author but has found a way to combine both his passions. His fantasy books have a health message and he is generously donating all his royalties from sales of the novel (online, kindle, in-store) to Evelina London.

Join Adrian at his book signing event

Adrian will be holding a book signing event on Tuesday 10 January at WHSmith St Thomas’ Hospital branch from 12.30 – 3pm. Find out more about Adrian and how inspiration for his novel stemmed from his time as a medical student when he encountered a young mum who had lost her son to alcohol poisoning.

"The book centres round a classic battle between good and evil, heaven and hell. Three sins are wreaking havoc on Earth and plan to destroy heaven; they do this by controlling humans through alcoholism.

I've weaved a positive health message into the book but it's still very much a fantasy novel. I just thought that if I can warn one young person about the dangers of excessive alcohol consumption then I'll be happy.

I learned a lot in my time as a doctor on Mountain Ward. Evelina London is a very special place and I'm proud to continue to support the amazing work that they do."

You can also show your support by purchasing a signed copy of the book, as all proceeds from the book signing event will also go to Evelina London.

About the book

Pennhi is a warrior of Genesis who was harshly banished from Heaven by the corrupt ruler Khrelis. The three Sins were once defeated by the warriors but their powers are rising once more. They are wreaking havoc on Earth and plan to destroy Heaven with their ferocious, ever-expanding army. Pennhi’s last hope in protecting humanity is to reunite the warriors of Genesis. With the help of a young man named Ken Jin, she must be prepared to do anything in order to persuade Khrelis to heed her warnings before the three dimensions are consumed by eternal darkness. More details available from Pegasus Elliot Mackenzie Publishers.

About Adrian

Adrian Li was born in Greenwich in 1988. He was brought up working in a Chinese takeaway but the family business was sold when he graduated from medical school. He continues to work as a doctor whilst simultaneously fulfilling his passion for writing. Adrian also enjoys playing the piano and is a keen football player.  

Adrian has previously raised funds for Evelina London through organising a special fundraising concert in May 2014, held in the Atrium. The music performed spanned genres and ages from symphonies by Mozart to pop songs by Sia.

Promoting the best care for premature babies http://www.supportevelina.org.uk/news/promoting-the-best-care-for-premature-babies-at-evelina-london http://www.supportevelina.org.uk/news/promoting-the-best-care-for-premature-babies-at-evelina-london#When:12:02:00Z Parents and their newborn babies in the Neonatal Unit are enjoying eight new reclining chairs to help them get optimum skin-to-skin contact, thanks to generous donations.

The chairs have been proven to help promote kangaroo care, a method which offers support in vital areas such as breastfeeding, bonding between parent and baby, decreasing time spent in hospital, building confidence and aiding mums with milk production.

Find out more about these fantastic chairs, and how they they help babies and mothers like Edgar and Leanne, pictured above.

Evelina London lands £2m LIBOR funding in Autumn Statement http://www.supportevelina.org.uk/news/evelina-london-lands-2m-libor-funding-in-autumn-statement http://www.supportevelina.org.uk/news/evelina-london-lands-2m-libor-funding-in-autumn-statement#When:08:44:00Z We’re thrilled to receive £2 million of LIBOR funding from the proceeds of banking fines, announced by the Chancellor of the Exchequer in the Autumn Statement.

This will provide funding towards both a new Fetal Cardiology Unit to diagnose heart problems in babies before they are born and Long Term Ventilation, Sleep and Neuro-rehabilitation facilities to provide care for children with complex, life-limiting conditions.

Redevelopment programme 

The funds will go towards an ambitious programme of redevelopment at Evelina London. The £2 million announced means that to date, we’ve raised just over £7.5 million towards a fundraising target of £10 million to help expand the hospital’s clinical facilities, to treat more children and to provide more specialist care.

Marian Ridley, Director of Evelina London, says: “We are delighted to have received this funding from the Treasury. The Long Term Ventilation, Sleep and Neuro-rehabilitation facilities will provide high quality care to families in a ‘home from home’ setting. Our new Fetal Cardiology Unit will help us provide specialist fetal scans to 2,200 mothers a year with high risk pregnancies.”

Our Evelina London Zip event on 2 December will raise another £1m towards the £10m target, to help build a dedicated Clinical Research Facility at Evelina London. This new facility will allow vital research to improve treatments and cures for numerous conditions including autism, epilepsy, congenital heart disease, kidney disease and allergies.

Visits to the silver screen for young patients http://www.supportevelina.org.uk/news/visits-to-the-silver-screen-for-young-patients http://www.supportevelina.org.uk/news/visits-to-the-silver-screen-for-young-patients#When:10:24:00Z Young patients at Evelina London can escape the wards for time at the movies thanks to the MediCinema, an incredible service run by the national charity of the same name, which is supported by donations.

The cinema screens the very latest releases for free and allows access to patients with wide-ranging needs, offering spaces for six wheelchairs and six beds as well as 100 seats.

Discover more about the MediCinema and why our patients and their families love it so much.

The MediCinema wouldn’t be able to run without donations from our wonderful supporters. Get involved today and help us continue to go above and beyond for our young patients.