1501252080 Evelina London News http://www.supportevelina.org.uk Evelina London News en info@supportevelina.org.uk Copyright 2017 2017-07-28T14:28:00+00:00 Urban Challenger’s story: Running for John http://www.supportevelina.org.uk/news/running-for-john http://www.supportevelina.org.uk/news/running-for-john#When:14:28:00Z For a third year running, Adrienne and Stuart Muir are raising money in memory of their son John. They share their incredible story.

‘On 4 September 4 2014 our twin boys John and Harry were born at St Thomas’s Hospital. Named after their grandfathers, both Harry and John spent time in the neonatal intensive care unit (NICU). Both boys were born at 34 weeks at an impressive six pounds, but as they were premature they needed a hand.

‘Devastatingly, five days after John was born, he was diagnosed with a previously undiagnosed genetic condition called Trisomy 13. He came off life support surrounded by his family and passed away at just eight days old.

‘It was so unfair, we felt like our family had been ripped apart at the seams. I had no idea how to piece it back together. The nurse in NICU were so respectful, we kept Harry and John together in John’s cot as much as we could and Harry loved snuggling up to his little brother. It was so lovely yet so heart-breaking in so many ways. It’s at those moments where I really understood the term “bitter sweet”.

‘In those final days with John, the one thing that we were both very clear about was that while it was the worst time of our lives, we wanted to do something to remember John and give back to a hospital who helped us in so many ways.

‘Having seen what these amazing people at Evelina London can do, we want to help provide them with some of the tools they need to continue doing this, and that is why we will be taking part in Guy’s Urban Challenge 2017.

‘Last year “Team Muir” raised enough money to purchase four resuscitation units for the new NICU room at Evelina London; something that many of you helped make possible. We are incredibly grateful to everyone who contributes to this cause, and honestly hope that none of you ever actually get to understand why.

‘There is not a day that goes by that we don’t think or talk about John. Having his twin brother growing each day is also a constant reminder of the hole in our family. We said we would honour John and each year we challenge ourselves to do something out of our comfort zone in his memory. This year we are supported by eleven friends and Team Muir is bigger and stronger than ever. We are blessed to have so many people helping.’

Inspired by Adrienne and Stuart's story? You can sponser Adrienne here or find out how you can take on your own challenge to support Evelina London.

Below: 'Team Muir' after completing this year's St Thomas' abseil.

Riding for my children – David Thirkettle’s story http://www.supportevelina.org.uk/news/riding-for-my-children-david-thirkettles-story http://www.supportevelina.org.uk/news/riding-for-my-children-david-thirkettles-story#When:15:29:00Z David Thirkettle has decided to enter the Prudential Ride London 100 mile bike ride to give a little back for all the care his two children Gemma and Luke received.

‘Our two children Gemma and Luke were born with 'Infantile Polycystic Kidneys', a genetic disease that eventually stops kidney function, which meant he required a kidney transplant. Gemma's kidneys gave up four years ago and after five months of tests we found out the great news that my kidney was an excellent match and I was able to donate it to Gemma in a very successful transplant.

‘As a father, the decision to donate an organ to make your child’s life normal and active again is the easiest decision in the world - although it didn’t quite dawn on me that it was really going to happen until the trolley arrived to take me to theatre! It was equally strange for Michele and Luke because at first myself, and then Gemma, were taken to theatre and so you have two loved ones in operating theatres whilst all you can do is sit and wait to see them again. Needless to say, it was a very long and emotional day!

‘The care we received at Guy’s Hospital was unbelievable too, as the amount of incredible staff involved in the transplant. From the first meeting with our kidney transplant co-ordinator, to meeting the surgeons, to the porters taking us to theatre, to the aftercare we both still receive to this day and everyone in-between!

They have all made the journey as smooth as possible, so much so that within a few months of receiving her new kidney Gemma was able to go back to her 'Exploring the World' ways and as we write this she is still exploring and is now in Nicaragua!

‘It’s for all these reasons that I have decided to give a little back for all the care we received and so have entered the Prudential Ride London – a 100 mile bike ride around London and Surrey.

‘Our story has not ended yet as Luke’s kidneys will decide to bail out in the next few years and Michele will be his donor. This time it will be myself and Gemma's turn to help wheel them down to theatre. But knowing that we have this amazing team ready to help us again makes it all that little bit easier!

Inspired by David’s story? You can sponsor David here or find out how you can take on your own challenge to support Evelina London.

Cycling for Evelina London – Iain’s story http://www.supportevelina.org.uk/news/cycling-for-evelina-london-iains-story http://www.supportevelina.org.uk/news/cycling-for-evelina-london-iains-story#When:14:58:00Z Charlie was diagnosed with Congenital Lobar Emphysema when he was born at Evelina London. Congenital Lobar Emphysema is a rare respiratory disorder in which air can enter the lungs but cannot escape, causing overinflation (hyperinflation) of the lobes of the lung. He was treated by Dr Durward who first did a Bronchoscopy on Charlie and referred Charlie to have a Left Upper Lobectomy.

When they were examining Charlie they found two holes in his heart. Once he had his lobectomy, Charlie was in PICU and slowly was getting better. Charlie was ventilated from the moment he arrived at Evelina London until he was successfully extubated and moved to the Mountain Ward where he was until he went home. His grandfather Iain was amazed by the level and scale of care that the Evelina London provided.

Iain said: “I remember when Charlie had been operated on and day by day he improved, then after two and a half weeks he was allowed to come home, which was such a great deal for us. I have a photo of Charlie smiling with many tubes attached to him. This picture is in our bedroom so every day we wake up and we see him, it reminds us of how lucky we all are to have him with us and that is down to Evelina London”.

Iain recalled when Charlie was first admitted to Evelina London and having to walk into intensive care and seeing how many seriously ill children were being cared for. He asked one of the staff how many children were there in intensive care and they responded with an eye opening comment which he never forget: “that all sixty beds were taken!” That comment always moved him to want to raise money for Evelina London and support the fantastic work they do.

Iain always had a passion for cycling and after looking through the fundraising website, noticed there were places for Prudential RideLondon-Surrey 100. This presented a fantastic opportunity for him to raise money for Evelina London.

Iain said: “My grandson will be at the finish line waiting for me and cheering me on. It’ll be a great way for me to show my appreciation for the great work Evelina London do”.

Inspired by Iain’s story? You can sponsor Iain here or find out how you can take on your own challenge to support Evelina London.

Cycling for Imogen http://www.supportevelina.org.uk/news/cycling-for-imogen http://www.supportevelina.org.uk/news/cycling-for-imogen#When:16:03:00Z ‘We have beautiful twins Imogen and Zac who were born four years ago. We found out during pregnancy that Imogen was going to have some issues with her heart. After scans at our local hospital we were referred to Evelina London. We had an idea of what it could potentially be, but had to wait until she was born before we knew the exact diagnosis, which made the entire situation a lot more stressful. She was born with a number of serious heart conditions.

‘We were told that without surgery she was not going to live. We were having regular scans at St Thomas’. When the twins were born Imogen was taken to the Special Care Baby Unit at St Thomas’. After seven days she was transferred to Evelina London for her first of many procedures.

‘Dr Bell was with us for the whole journey and is still her cardiology consultant today. Mr Austin was her surgeon and without his skills and knowledge Imogen wouldn’t be the smiley little girl she is today. Without the procedure, Imogen would have certainly died and yet despite the risks involved, Mr Austin maintained his composure and saved Imogen. We later found out that the procedure Mr Austin carried out hadn’t been performed before and quite frankly without his knowledge my daughter would not be here today.

‘In January 2014 she had open-heart surgery where Mr Austin worked his magic again by fitting her pulmonary heart valve. She spent nearly a month recovering from the surgery. She has been in and out of Evelina London many times over her four years of life and with every appointment and procedure, we have been looked after by Dr Bell and the nurses of Savannah Ward and PICU (the Paediatric Intensive Care Unit).

‘When we go into Evelina London, the courage and support embodied by Mr Austin and Dr Bell is evident everywhere. All the doctors and nurses will go that extra mile to ensure the best care for your loved one, and we are really appreciative. Without the help, skill and support of this amazing hospital, families like mine and many others would have had a very different outcome.

‘This year I will be taking part in the Prudential RideLondon – a cycle ride that starts at the Olympic Park in London where it will then stretch out in to Surrey, up Leith Hill and Box Hill then back in to London finishing on the Mall. This will be 100 miles on closed roads. As Evelina London has played a major role in my life, as a parent I’m raising money so they can help other families.’

Inspired by Imogen’s story? You can sponsor Andy here or find out how you can take on your own challenge to support Evelina London.

Cycling for Evelina London – Devan’s story http://www.supportevelina.org.uk/news/cycling-for-evelina-london-devans-story http://www.supportevelina.org.uk/news/cycling-for-evelina-london-devans-story#When:15:43:00Z Devan was born with a rare Cyanotic Heart Defect, he was diagnosed at just 8 weeks old. Within 3 days of falling sick Devan's condition deteriorated to a point where his little heart was struggling to pump blood around his body. Devan was diagnosed with Total Anomalous Pulmonary Venous Drainage (TAPVD).

‘By day five, Devan had been transferred to Evelina London where he was assessed immediately. On day six Devan underwent life changing surgery which saved his life – open heart surgery at 8 weeks of age. Devan is now two years old and is leading a happy and healthy life.

‘The service and treatment we received was outstanding, caring and considerate. Every single member of staff we met during the two weeks we stayed at the hospital went above and beyond in ensuring Devan got the best care he needed. Words cannot express our gratitude for the high standard of care and support that we received from the moment we entered, to the time we left the hospital.

‘One of the things me and my family promised ourselves when we took Devan home, was that in years to come we would like to do something on a more regular basis for Evelina London to show appreciation for the great work they do and for saving Devan’s life.

‘To support the ongoing work at Evelina London, I will be cycling from London to Amsterdam on Friday 7th July 2017, a journey taking two days to complete, totalling 251 miles and cycling 185 miles.'

Inspired by Devan’s story? You can sponsor Devan’s father Harry here or find out how you can take on your own challenge to support Evelina London.

Southwark News raises £100,000 for Evelina London http://www.supportevelina.org.uk/news/southwark-news-raises-100000-for-evelina-london http://www.supportevelina.org.uk/news/southwark-news-raises-100000-for-evelina-london#When:14:21:00Z Thanks to Southwark News and the local community, Evelina London can buy new equipment for the Neonatal Intensive Care Unit (NICU) and the Evelina Hospital School.

Southwark News ran an amazing appeal over six years for Evelina London.

Here are just a few of the ways that the local community came together to raise funds for our hospital:

  • Southwark News Managing Director Chris Mullany completed an amazing six events over four years, helping to raise over £20,000. One particularly gruelling challenge involved a 160-mile run across the Sahara in the Marathon des Sables. The toughest footrace on earth took place over seven days and Chris faced temperatures above 48 degrees Celsius, all whilst navigating sand dunes and Desert Mountains.
  • Six brave men bared all by performing the ‘Full Monty’ in from of 150 people at a pub on Old Kent Road. The group from Bermondsey raised £2,500 in total.
  • Staff, readers and a local councillor came together to climb three of the UK’s highest mountains as part of the Three Peaks Challenge.

We’ll now be able to buy two new ventilators for premature babies as well as an infant warming system which provides heat for babies that are too sick to maintain their own temperature. We’ll also be getting a new intensive care cot that mimics the womb and the Evelina Hospital School will be able to hire a professional storyteller who will work with children to build their speaking and communications skills.

Marian Ridley, Director of Evelina London, said: ’Thank you to Chris and the whole team at Southwark News for dedicating so much time and effort to fundraising for Evelina London. They made an incredible commitment, took on some difficult challenges to raise money for us, and their efforts will have a big impact’.

Chris Mullany, Southwark News Managing Director, said: ‘The more that we as a company have learnt about Evelina London and what it does, the more we’ve been struck by just how important their work is.

‘Our appeal has come to an end, but we hope that readers and local people will continue to support Evelina London in whatever way they can.’

Find out how you can get involved in fundraising for Evelina London

Grainne Walsh - ‘I can’t believe how quickly it was all over’ http://www.supportevelina.org.uk/news/grainne-walsh-why-im-abseiling-down-the-side-of-st-thomas http://www.supportevelina.org.uk/news/grainne-walsh-why-im-abseiling-down-the-side-of-st-thomas#When:16:09:00Z 'Going over the edge was really really tough, but I knew I’d do it as friends & family had been so generous, I’ve raised an amazing £3,000!' Grainne Walsh, Advanced Nurse Practitioner for Children's Transplantation at Evelina London, tells us about her amazing job and explains why she took part in the St Thomas’ Abseil!

‘When children have an organ transplant, lifelong medicines and hospital appointments are a vital part of life to help prevent organ rejection. I work closely with my team to give our patients the highest quality care possible. However, the fact is that the children I care for here at Evelina London will be patients for life, never getting fully away from us. On a daily basis I share the rollercoaster of transplantation with the children and their families with all its highs, lows and scary bends!

‘Every year, the Evelina London VIPs compete at the British Transplant Games. Our children’s transplant sports team are called the Evelina London VIPs as we think they are very important people, patients and penguins (our transplant clinic is in the penguin zone of our hospital and my transplant clinic consulting room has penguins, from all over the world, donated by our VIP children and staff.

‘The Transplant Games are a highlight of our year. Getting fit after transplant surgery is really important and the Games allow our children to compete in both fun and serious sport. Many transplant recipients can feel different to their friends, especially teenagers. The Games allow them to train and compete with their peers who have been through similar experiences.

My challenge...

‘I abseiled down the side of St Thomas’ Hospital to raise money to help our Evelina London VIPs compete at this year's Games. Going to the Games is not cheap but is so important. We don’t ever want money issues to prevent a child or their family from experiencing the event.

‘I had never abseiled before so this was a serious personal challenge. The thought of it made my heart race a little faster than it should! I was delighted that my colleague Dr Caroline Booth, one of our Consultant Paediatric Nephrologists, joined!

‘The children I care for will be patients for life and our team try to support them to reach their potential in life, whatever that may be.’

Find out more about how donations help our transplant children take part in the Games. Discover how you can donate to Evelina London or start fundraising today

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:17:11:00Z 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 recently faced one of his biggest fears!

Gareth is absolutely terrified of heights but abseiled from the roof of St Thomas' Hospital on Friday 12 May to show his gratitude to the hospital. He's aiming to raise £10,000 and you can sponsor him 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!

‘Running the London Marathon in memory of my son Isaac’ http://www.supportevelina.org.uk/news/running-the-london-marathon-in-memory-of-my-son-isaac http://www.supportevelina.org.uk/news/running-the-london-marathon-in-memory-of-my-son-isaac#When:15:44:00Z ‘I’m running the London Marathon this year in memory of my son Isaac who passed away in the NICU at ST Thomas's on 1st August 2012. He'd fought very hard for 6 days after a placenta abruption whilst we were at a hospital in North London. He was transferred to NICU only a few hours old and the amazing team at St Thomas' and the Evelina did all they could for him to make him comfortable, put him through pioneering treatment to try to limit further brain damage, but sadly aged 6 days, with the results showing quite how severe his brain damage was, our consultant made the decision to turn off his life support.

‘At the time, despite how tragic the circumstances were and how brave and strong our little boy had been to fight to survive, we were amazed by the quality and skills of the staff that looked after us, and this has continued in the 4 years since his death. We used Evelina London’s bereavement counselling services for a number of years and are still in touch with the nurses and consultants that looked after us all so well in our time at the hospital.

‘After his death we pledged that we would raise money in his memory for the Evelina London and in the four and a half years that have followed people have taken part in numerous events in memory of Isaac, including marathons, half marathons, colour runs, obstacle runs, a sky dive, abseil, a birthday event each year and even a Ukelele concert in 2016.

‘In that time we have raised just over £35,000 in his name through our site Running for Isaac as well as running a blog to try to show people just what it's like to go through the tragedy of losing a child. It's very much a taboo subject, so as well as raising the money hopefully we are able to raise awareness of the amazing work done at Evelina London as well as break the very difficult taboo of losing a child. We have also now become Fundraising Ambassadors for Evelina London, and look forward to attending many inspiring events showing how special Evelina London is.

'This will be my second time running the London Marathon. I ran it back in 2013, 8 months after Isaac died, but training has been dreadful this time so it’s going to take a very long time to get round, but with Isaac there with me every step of the way I'm sure I will get round, hopefully before the after party finishes. 

Find out more about how you can donate or start fundraising today.

Running for Evelina London - Jon’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 ran the 2017 London Marathon for Evelina London Children's Hospital and raised £4,960, finishing with an impressive time of 03:55:58. It was Jon’s second time running for our special hospital. 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.’

Find out more about how you can donate or start fundraising today.