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.
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.
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’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.
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.]]>
‘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!
‘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.’
‘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 firstname.lastname@example.org.
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.]]>
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.
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.
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.
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.]]>
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.
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.
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.
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.
The celebration was held by the ear, nose and throat (ENT) service especially for tracheostomy patients, and was made possible thanks to generous donations.
It gave families of children who are either living with or have previously had a tracheostomy a chance to meet, share experiences and celebrate.
A tracheostomy is a small plastic tube which is inserted into the windpipe to form an artificial airway for people with breathing difficulties. It can affect aspects of a child’s life that are usually a normal part of development, such as speaking, so it’s invaluable for children and their families to be able able to socialise with others in a similar situation.
‘It’s an opportunity for the children who have such a long journey in hospital to meet kids who are a bit further along in the process,’ explains Vicky Powell, ENT nurse specialist. ‘Many children have moved on beyond their experience of having had a tracheostomy or are living a normal life outside of hospital with it. So getting them together helps those who have recently gone through it to see light at the end of the tunnel, and that life won’t be just hospitals and appointments for them forever.’
One-year-old twins Blake and Ryan were there with their mum and dad, Ellé and Damien.
After having an emergency tracheostomy at a local hospital, Blake was transferred to Evelina London for specialist care. He has a condition which means his airway is narrow and so it's difficult for him to breathe.
‘It’s such a good idea to organise something like this,’ says Ellé. ‘It’s nice for us to see older children who’ve had similar difficulties just being normal kids. I can see it’s not stopping them from having fun and it’s giving us hope for Blake in the future.’
Children and their families enjoyed a full day of celebrations including live entertainment, a tea party, face painting, crafts and a fun photobooth. There were some fantastic fancy dress efforts from everyone, including the staff!
2016 was the second year running that the ENT service have been able to throw a party like this with the help of donations. If you’d like to help provide amazing extra experiences like this for our young patients, there are lots of ways you can support – find out more.
Above right image: Blake and Ryan with their mum and dad, Ellé and Damien.]]>
Soraya has been inspired to run through four of London’s Royal Parks to thank the hospital for the kind and expert care her son William has received for his cleft palate. She shares William’s story with us here.
‘We have been coming to Evelina London for over 12 years now – William had his first operation aged three months back in early 2004. Since then, he’s had several more operations at Evelina London and regular check-ups at the South Thames Cleft Service.
‘The cleft team and medical and support staff are always so kind to William, and my husband Tom and I are so grateful for the care William gets. Seeing your child going into theatre is heart-wrenching, and seeing them in pain afterwards is no better.
‘The medical staff who looked after William for his recent bone graft operation in March 2015 were fantastic. They helped William keep calm, and it really helped us to see him in good hands. William also spent time at Evelina School which was a really great way to distract him ahead of his operation.
‘No one wants to go to hospital, and for children in particular it’s a daunting and frightening experience. Evelina London tries its hardest to reduce that worrying feeling by making the hospital environment welcoming and friendly, and we are very grateful that William is looked after so well.’
‘Evelina London is very close to our hearts – we have seen first-hand how important the work it does is for children. Raising funds and awareness about cleft lip and palate and the treatment involved are two reasons for running for the hospital. However, the most important reason is William. We are extremely lucky to have him - he is absolutely amazing!
‘Having completed several 10K runs in the past, I decided it was time to tackle my first half marathon and couldn’t think of a more deserving cause than Evelina London. It’s a big step up from 10k, but any distance pales into comparison to what William has been through – and will continue to go through – with his surgery and treatment as he moves towards adulthood.
‘William has been helping me train for the race – he runs (much faster than me) and this year he represented our borough at the London Mini Marathon. We recently ran our local ParkRun and he kindly came back to run with me to help me finish as he completed the course so quickly. William and I have also enjoyed running together for other local runs – again, he kept stopping so I could keep up with him!
If you’d like to support Soraya (and her super-fit trainer William), you can donate to her fundraising page here.
Pic: Soraya and William at one of their training runs earlier this year.]]>
Pictured: Ania, Jelena and Chris from the Evelina Renal relay team looking very relieved at finishing the challenge!
This weekend over 290 athletes made it to the finish line for the second Guy’s Urban Challenge – a 2.4km run around Guy's Campus, followed by a 15km cycle on a state-of-the-art Wattbike, topped off by a gruelling stair climb to the 29th floor of Guy's Tower – the world’s tallest hospital building.
A large number of the participants were raising funds for Evelina London – many of them to say ‘thank you’ for the amazing care they or their children have received at the hospital. So far, the total amount raised is over £94,000 - and we're still counting. Here are our highlights of the two-day event.
No shoving at the start line, please!
We're off #GuysUrbanChallenge @KieronJBoyle cuts the ribbon! @SupportEvelina @SupportGSTT @GSTTnhs pic.twitter.com/3lCjrCyysQ— Gemma Peters (@gemmapeters) 30 September 2016
Georgie Smith took on the challenge to say thank you to Evelina London for her heart surgery. You make it look so easy, Georgie!
Georgie had heart surgery @EvelinaLondon at 5 days old, now she's doing #GuysUrbanChallenge https://t.co/CuOnMpC7Eo pic.twitter.com/ZfPyBHzCmN— SupportEvelinaLondon (@SupportEvelina) September 30, 2016
Well done to Laura Roden, who was pedalling super-hard! Laura's little niece Hope is treated at Evelina London.
Finished #GuysUrbanChallenge in support of @EvelinaLondon still time to sponsor me https://t.co/AcxKY7QtxH pic.twitter.com/UQJQqTO4fP— Laura Roden (@dance_laura) October 1, 2016
Thanks to each and every person who took part in the race, to everyone who donated, to the volunteers who helped the challenge run smoothly, and to the firms which provided fantastic prizes for our raffle and much-needed energy boosts en route to fuel the challengers – you’re awesome!
You can check out more pictures from the two-day event on our Facebook photo album.
Registration is now open for Guy's Urban Challenge 2017 on Saturday 30th September 2017. Register today!]]>