Issue 7/ Winter 2020
Front cover: The Butterfield Family. See story p26.
Welcome Welcome to the 2020 edition of Liverlife. What a challenging year it has been for each and every one of us. This time last year we could never have envisaged the events that have unfolded over the last 10 months. It was certainly not the 40th anniversary year we had planned and has been the most difficult in CLDF's history . Throughout, our main concern alongside surviving as a charity has been our families , young people , the newly diagnosed children and how they have been affected by the pandemic. Our income has dropped severely and difficult decisions have had to be made. Unfortunately half of the team have been through redundancy, as we try to reduce costs and fight for our survival. Other activities have been suspended, but our focus remains on transforming lives, informing, supporting and being the voice of families and young people affected by childhood liver disease. At half term in February 2020 I was lucky enough to be part of the team that delivered the Talk Tell Transform project. Little did we know it would be our last physical event of the year. Spending a week with 12 of our inspiring young people, learning about their stories and challenges and watching them bond as a group and grow as the week progressed was a privilege. The films that were created on the project are some of the best. I must admit, when times have been hard this year, I have watched and rewatched them, they uniquely express why the charity is needed and the impact of our work. If you have not had the chance to watch them please do go to our website and take some time to view them. I am indebted to each and every one of those young people; their films and our memories of that week have really helped me and the team. In this edition of Liverlife, we celebrate our young people, our fundraisers, our 40th birthday and let you know more about our work over the last nine months and how our services have adapted. The Impact Report for 2019 is also presented alongside a host of other news and inspiring articles. I would like to take this opportunity to the thank our passionate and committed staff team for all the hard work and the many supporters who have been able to donate to the charity over the last year. Your ingenuity ,kindness and good wishes have been so gratefully received. We really would not be here without you. We hope that you and your family have a wonderful Christmas and, as we look forward to 2021, be assured that CLDF remains determined to come through this financial crisis and be here for all our families and the families of children who will be diagnosed in the future. Please don't hesitate to get in touch with me to provide feedback or if you have any suggestions around fundraising opportunities. With best wishes for a bright and peaceful festive season
Alison
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ceo@childliverdisease.org
Liverlife
Contents Yellow Alert demand increases Our role during the pandemic Didn’t They Do Well? Growing up with Alagilles How Support looks in 2020 Changes to the Board Letting go Emma pedals for Pudsey Impact Report My liver disease didn’t stop me Fantastic Fundraisers Christmas fundraising In Loving Memory Young fundraisers How we fund research CLDF at 40 New leaflets for parents Will you help us?
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Demand for Yellow Alert resources increases As we reported in last year’s Liver Life, in March 2019, we refreshed and relaunched the materials for our Yellow Alert campaign which promotes early referral for testing of prolonged jaundice in newborns.
The role of GPs, health visitors, midwives and practice nurses in spotting the signs of liver disease and arranging specialist referral is a vital one and the Yellow Alert resources have been designed to give health professionals the information they need in the quickest,most accessible way possible. The yellow alert packs contain: a stool chart information about how to download the app a jaundice information leaflet for new parents the CLDF jaundice protocol document for healthcare professionals which outlines when to refer, basic overview of tests and details of the specialist units for further advice an awareness poster to put up in clinics and waiting rooms The new look packs have been well received and in the 12 months following the relaunch we issued 12,745 Yellow Alert resources, more than double those sent out the previous year. And it has been interesting to see how these materials are being used.
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“We were approached by the Children and Families Care Group at Doncaster and Bassetlaw NHS Trust, which comprises midwives and infant feeding specialists in neonatal units, postnatal units and maternity wards”, says Information and Research Hub Manager, Harpreet Brrang. “They requested a bulk order of Yellow Alert materials as they now provide our ‘Jaundice in the Newborn Baby’ parent leaflet and stool chart to every new parent and talk it through with them. It’s a simple but effective way of ensuring that parents know the warning signs of liver disease so will get the right medical help at the earliest stage. “During this year we’ve had similar bulk orders from Family Nurse Partnerships, community birthing centres, health visiting teams and even care navigators, all of whom have started to provide stool charts or parent leaflets either to every new parent or those whose babies have jaundice, depending on their local protocol. “We welcome such orders as education in this area is vital and we know that the earlier a child with symptoms is referred, the better the outcomes for that child.” For further information on Yellow Alert or to order materials go to yellowalert.org.
CLDF’s role during the pandemic While the coronavirus pandemic meant there were certain activities which we couldn’t undertake here at CLDF, it also created new projects for us as we sought to ensure our young people and families were properly represented during this time of national crisis. For example: Contributing to official guidelines. We supported the National Institute for Health and Care Excellence (NICE) in the development of two of their COVID-19 rapid guidelines:
Gastrointestinal and liver conditions that affect the immune response Children and young people who are immunocompromised These guidelines were developed to help medical professionals respond quickly and consistently to the challenges of the coronavirus pandemic. They were developed in collaboration with NHS England and NHS Improvement with a clinical group and we were proud to give our input alongside other specialist societies, royal colleges and charities.
Reduction in biliary atresia referrals Early on in lockdown, we became concerned at the drop in referrals to specialist centres for biliary atresia – at the start of the pandemic there were no referrals for a month.Timing is crucial with biliary atresia as for Kasai surgery to be successful, it ideally needs to take place before the child is eight weeks old. We raised awareness of this issue and then worked closely with specialist paediatric liver centres, the Institute of Health Visiting and other professional bodies to ensure biliary atresia referrals continued to take place during the coronavirus outbreak and that health professionals recognised the signs during newborn baby checks.
Providing your feedback We also commented on the shielding guidance issued by BSPGHAN (British Society for Paediatric Gastroenterology, Hepatology and Nutrition) and liaised with the Scottish Government regarding the shielding guidance they provided to ensure that the needs of children and young people with liver disease were covered.
Over the past few months there have been a number of surveys to investigate the impact of the pandemic on those with rare conditions or specific paediatric liver conditions. We were happy to share them with you and very grateful to those of you who took part, particularly in the Genetic Alliance Patient Experience Survey, as this is the one which will guide rare disease services in the UK over the next few years.
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Didn't They Do Well ?
Graduate Reece joins the NHS Reece, who has Alpha 1, graduated from Brighton University last summer with a 2:1 in Media Studies. Whilst he puts his degree to good use doing freelance media productions, his day job is in the NHS Pharmacy Home Care department and he is one of our NHS heroes, working all the way through the Covid 19 crisis. Mum, Christine, says “Reece's best friend is his 100 year old granddad. They are like terrible twins and cause all sorts of havoc when they are together!”
And Emma‘s with the fire service! Emma is doing an internship with the Royal Berkshire Fire and Rescue Service as a Communication and Engagement Assistant. “I started the job completely remotely as I live in the North West, over 200 miles from the office,” says Emma. “So I had to get to know my team mates, learn how to use new pieces of software and get to grips with how they work solely over video calls. I have now managed to visit the office in Reading, which took me five and a half hours on the train, but meant I finally got to meet all of my team mates in person! I've absolutely loved my time with them so far. I have learnt so many new skills and grown massively in confidence.”
Daniel’s making it in music Avid guitar player, Daniel, has just completed his Level 3 BTEC in music and is embarking on a degree in Commercial Music at Platform One college of music in Newport, Isle of Wight. He also works part time in a guitar shop which is owned by his old primary school guitar teacher. “Daniel is keen to pursue a full time career in the music industry and his passion is playing live music with his band,” says his dad, Keith. “He's currently the lead guitarist in a rock group called 'Obscure Colours'. They are just starting out and have played a couple of gigs at an excellent music venue on the Isle of Wight called 'Strings'.” Good luck Daniel – we hope to hear more from you in the years to come!
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Roisin and Millie off to uni Roisin(left) and Millie have been friends since they met last year through CLDF. Now Roisin is off to Stirling University to study paramedic science and Millie is studying psychology at Dundee. “Everyone at CLDF, both staff and young people have been great during lockdown and it has been so good to have each other for support,” says Millie.
Harriet’s working with horses Thirteen year old Harriet has come through a tough 2020, with three months of whooping cough, losing her pet rabbit and her greatgrandfather and then her beloved horse becoming poorly. So she has welcomed an amazing opportunity to become part of the team at Van Egmond Stables in Cheshire. “It means early starts every weekend, mucking out the stables and general yard maintenance,” says mum Michelle. “But she’s doing what she loves, working with horses and having lessons with the professionals. She’s dedicated, hard-working and always smiling.”
Scott embarks on legal career Scott has achieved a 2:1 in law at Solent University. “There could be no graduation ceremony of course but I am so proud of him. He is hoping to start work as a paralegal in Birmingham very soon”, says mum, Becky.
Sophie welcomes baby Rosalie Sophie, who is 24 and had a transplant four years ago, welcomed baby Rosalie into the world on July 1. “My pregnancy went really smoothly and even though I had to have an emergency caesarean, I have recovered well,” says Sophie. “When you’ve been through transplant, you don’t worry about a C Section scar! I’m loving being a new mum – Rosalie is adorable.”
Hard work pays off for Phoebe Sixteen year old Phoebe, who received a liver transplant as a baby, passed all her GCSEs and has now started a film and media production course at college. “I am immensely proud of the determination and resilience she showed in the face of all this year’s uncertainty,” says mum Dionne. “And I know she will do us even prouder in the years to come”
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Gemma goes back to class Nineteen year old Gemma has just started work as a Learning Support Assistant for pupils with special needs at Furze Platt Senior School in Maidenhead. “It is totally stretching but equally incredibly rewarding and it is such a joy to see children actually benefitting from my support and progressing,” says Gemma. “I have already been given responsibility for running the Home Learning Clinic for the Year 7s after school which is a huge compliment. Although at times overwhelming, I am totally privileged to have the job I do. I love it!"
Sophie goes it alone Like many of our young people, eleven year old Sophie (left) has proved a star at coping with lockdown and all the associated restrictions this year. “She is taking real responsibility for keeping herself healthy and safe,” says mum, Louise. “All in addition to the very big step of starting a new school without her twin sister - she has such a positive attitude to this and hearing the two girls share the news of the day at school is wonderful. I think it is actually strengthening their relationship as they enjoy their time back together so much.”
Growing up with Alagilles Andrew, who is now 40, shares his story of growing up with Alagille syndrome. First, we hear from his parents, Janet and Howard, who recall feeling frightened by the diagnosis of a condition they had never heard of.
“Andrew was our first child, he was just 12 weeks old when he was diagnosed with Alagilles. We didn’t even know liver disease affected children,” says Janet. “He was a happy baby but the scratching was a nightmare and there was no way we could stop it. “When he was two, we were told Andrew’s heart was affected. The doctor said it would probably not affect him until his mid years, he was spot on. Andrew’s younger sister and brother were perfectly healthy, and we always made sure his life was as normal as his siblings. This all changed though when he was eight years old and caught measles. Over the following months he became seriously ill, spending lots of time at Kings. It was a very difficult and worrying time, particularly when we were told that Andrew's only option was a liver transplant.
Andrew (left) with his family
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" In those days they weren't doing paediatric transplants at Kings so he was transferred to Addenbrookes. Here we met Professor Roy Calne, who agreed to do the operation "Andrew's first transplant was sadly not successful. Thankfully another liver was found, and he had a second successful operation just days later. After 10 weeks in hospital, Andrew came home with what felt like a pharmacy full of tablets. But he was here and although he has faced challenges in the years since then, he has always overcome them. Andrew is greatly respected at work and always gives everything the best he can. He has come such a long way and is an inspiration to us all."
Andrew's story Although I was aware that I had a liver condition when I was very little, it didn't affect me hugely. From about the age of seven, however, my health deteriorated. I became more jaundiced, my tummy got bigger and I would need an afternoon sleep at school. I do recall the drama of being in an ambulance with blue lights, sirens and a police escort! And I also remember being in hospital for a while after my transplant. When I did eventually come home, I was no longer jaundiced, and the big belly had pretty much gone. I looked a bit more normal and that was good. In due course I returned to school and normality. After a couple of years, however, I started to walk with a limp and my left hip was painful. I was diagnosed with Pearthes’s Disease, a crumbling of the ball and socket joint. This was a side effect of one of the medications I was taking . So aged 11, I had two operations on my left hip to rectify this. Unfortunately, the operations meant my left leg was now shorter than my right leg by almost 2cm. This, together with the fact that I had missed a lot of school so was not exactly on the same level as everyone else , meant that when I moved to senior school, I was bullied. I got through it by building up a mental resistance and barrier.
Andrew is now 40
I knew it wouldn’t last forever - but I suppose I would have liked to talk to someone in a similar situation, the way young people can now through CLDF. In 1996 I got the GCSE grades I needed to go to college and do Business Studies, the best thing I ever did. I met new people, passed my driving test and got a Saturday job. All of this boosted my self-confidence . After college, I got a full-time job in finance where I have been pretty much ever since. All my adult life I have enjoyed myself as much as I could and I have done so many great things. I’ve been on many holidays and attended sporting events at home and abroad. Me, my brother and my dad are season ticket holders at Spurs and I’m looking forward to the day when we can safely go back there! I have my own flat, car, independence and a good group of friends. In 2016, I had a left hip replacement which took away the pain in my hip and reduced the difference between my left and right legs and last year I underwent open heart surgery at Barts Hospital in London, to improve the blood flow and to help me to stop getting out of breath. Having Alagille syndrome did affect me as a child but I feel I overcame every hurdle which was put in front of me. My message to anyone with my condition is stay strong, be positive, and you will get through it with the love and support of your family and friends.
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How support looks in 2020 One of the consequences of the pandemic is that many of the ways in which we support our families are just not possible at the moment. We can’t go to clinics, pop along to the wards for a chat, put on family weekends in hotels or even get together for a bowling day. This has all happened at a time when our families’ need for support has never been greater. So, our support system has changed. But it is very much here! “During lockdown we began hosting coffee and catch up sessions over Zoom, enabling families to connect with each other and share support on issues such as shielding and home schooling,” says Head of Support, Michelle Wilkins. “As the months have progressed, we have developed the Zoom catch ups into sessions which cover specific issues, such as starting school or moving into higher education. While there is no question that this situation was imposed on us, we have found that there are real benefits.
I just wanted to thank you for the unshielding Zom last week. I really got so much from this and thought it was all so well organised and set up. It’s also the first time I’ve spoken with other parents with children with liver disease and I felt strangely emotional - for the first time like someone understood how I was feeling about everything. If there are any more parent zooms in the future, I’d definitely love to join!
I just wanted to share my gratitude for the recent Zoom I attended with two of your team and other concerned parents about the return to school for our children. It was so very helpful to hear parents with the same worries and concerns come together to share their fears and also good ideas!
"Families don’t have to make special travel or childcare arrangements for a zoom catch up so the get-togethers are easier to attend and take up far less of people’s time. Participants can choose to have their video on or off, ask questions anonymously or just listen, and do so all from their own home or hospital room. It’s enabled us to bring together families from around the UK, which reduces a sense of isolation during what has been a lonely time for many. “It’s important that people realise that even though they are not seeing us at clinic, we are still here for our families and our young people,” continues Michelle. ”If you have a query or something you would like to talk through, just drop us an email or a facebook message and we promise we’ll get back to you."
Extended role for Kate We’re delighted that our Scotland Support Officer, Kate Conroy, has extended her hours to help support children and families throughout the UK. “It’s been great getting to know even more families,” says Kate. “And while I miss meeting people at clinic, the Zoom calls have been really helpful, particularly on specific issues such as supporting a family on a benefits appeal or claim. We’ve also done some calls directly with schools to help address issues of children returning after shielding.” Over the next few months, we are planning further Zoom sessions on specific liver conditions. We’ll be contacting parents with full details so make sure that we have your email address and permission to contact you. Drop us an email at either of the addresses below. Contact us any time at: families@childliverdisease.org (parents and any family members) or ypo@childliverdisease.org (young people)
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Support for young people
This year has been particularly tough for all young people, with the major disruption to education, cancellation of exams and enforced separation from friends during lockdown. For young people with a liver condition, many of whom were shielding for several months, it was doubly hard. So we made plenty of use of our dedicated Facebook groups, Hive for 13 - 15 year olds and Hive+ for the 16 - 24 age group. From these support Holly’s Wild Camp groups we were able to launch our Hive Hangouts. art work
“It was really important for our young people to realise that although they may have felt isolated, they were not on their own in this,” explains Young People’s Digital & Engagement Officer, Louise Hawkes. “So, during lockdown we hosted weekly Hive Hangouts with a range of activities from bake offs and quizzes to pamper sessions and Pictionary and had 33 young people join! I also had 28 young people contact me directly via Hive or Hive+ for one to one support.
Doing Hive Hangouts has been so good because I can catch up with people and have a bit of fun!
“As lockdown eased, we tailored the Zoom sessions to cover issues of particular concern, the main one for our young people being transition to higher education. What has been really satisfying amongst all the difficulties which Covid 19 has presented, is not only that we have been able to support our young people through such a stressful time, but to see how they have supported each other so well. We are still in uncertain times, but we want our young people to know that we’re here for them as much as ever. " It has been great to be able to share and talk about experiences with people who understand what it's like and have the same anxieties and concerns.
Hive and Hive+ have proved a great way of maintaining a vital support network over the past few months and we shall ensure that continues and we would suggest to any young person (or their parent) who has not signed up to scan the QR codes below or contact Louise (details on previous page). NB for young people under 16 and not already signed up to CLDF, we shall need parental consent.
HIVE (13-15 year olds)
HIVE + (16-24 year olds)
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Events programme Our family events have been an established part of CLDF’s family support for years so we weren’t going to let a pandemic put a stop to them! Breakaway in May was our first virtual event, when young people proved themselves to be up for team games and a bug eating challenge even though they weren’t actually in the great outdoors. And in August we had Wild Camp. “It was great fun” says Kate. “The families really got involved and made it a weekend to remember. We had brave bug eating, an indoor camp, an outdoor tent, a scavenger hunt and lots of smiles. We were really proud of the families who took part and they certainly earned their Wild Campers awards.” In November it was lovely to see so many Scottish families joining in our very first digital conference. “We were very encouraged by the level of participation from the whole family,” says Michelle. “Parents joined us for the conference while young people had fun doing their own activities. They were all back on the Saturday evening to enjoy the family quiz and returned on Sunday for our last session and Scavenger Hunt. We also had lots of helpful ideas and suggestions which we will use for the planning of future digital events.”
Holly's Wild Camp artwork
It takes a lot of time but also energy to pull off such an event and we all appreciate it so much
Changes to Organ Donation law in England On May 20 this year, the law on organ donation in England changed to an opt-out system. The new system works on the understanding that all adults agree to become organ donors when they die, unless they have made it known that they do not wish to donate, so we all still have a choice and families still need to give their consent for organ donation to take place. So it is more important than ever that people make their wishes known to their families. We know how thankful many of our families are to donors so please continue to share this information and encourage people to talk to their families about organ donation.
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Changes to the CLDF Board by Mairi Everard This year we have said a big thank you and goodbye to Tom Ross who has retired after chairing our Board of Trustees for 19 years. As Chairman he was greatly liked and respected, and I would like to acknowledge the very significant contribution he made to the growth and development of the charity. Through his work both with the previous CEO, Catherine Arkley, and our present CEO, Alison Taylor, the services CLDF provides and its standing as a representative charity for families living with liver disease, have greatly increased over the years. Tom had wide experience in the financial world and he brought this knowledge to the Board . He has taken the view that the charity is moving into a new stage of development and that new skills and knowledge will be needed to take work forward. We all owe Tom a great debt of gratitude . He is greatly missed, but CLDF is very much stronger and more resilient today due to his time as Chairman. I became Chair of CLDF on Tom’s retirement. He will be a hard act to follow. Almost immediately we had to deal with Covid 19 and all it has involved for staff and families. Our income has dropped very significantly and the Trustees have had to make some very hard decisions.
We decided in March, that our main aim would be to continue the core services to families, with the goal of maintaining CLDF and developing its future strategy as and when circumstances and funding allowed. Stafff now work from home and all face to face activities have been suspended. The most painful decision to take was making six staff redundant. Those remaining have worked tirelessly to maintain the service to young people and families and we are grateful for their commitment. We are looking to 2021 to be able to start planning for the future but all will depend on national circumstances ,and income, as we go forward.
A little about myself I have been a Trustee of CLDF since 2005. A family member’s son was born with biliary artresia and had one of the early transplants to treat the condition. I have watched him grow up, dealing with the challenges he and his family have faced, and hope that this has helped me in my role with the charity. Professionally, I have worked as a social worker in child care, child protection, and with children with disabilities, and their families. I have also managed family support services within several charities and have an understanding of the difficulties families and young people face, and the role charities can play in helping them.
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Letting Go Every parent knows how it can be tough when their teenagers feel they need them less and want to live their lives more independently. When that young person has a liver condition it can make it harder – for the child and their parents.
Jamie's story Jamie, who has biliary atresia and received a liver transplant when he was six months old, has always loved football. Last year when he was 18, he was offered the chance to spend the summer coaching children at summer camps in the USA. While it felt like a dream come true for Jamie, his mum, Pamela, was apprehensive. “Football is such a huge part of his life, but this would mean three months where he would be responsible for taking his own meds,” she explained. “I’ve always been here to remind him, and I was worried that with all the excitement and distractions, he would simply forget. The thought of him then becoming ill so far away was frightening.” Pamela didn’t want her own worries to stand in the way of such a huge opportunity for Jamie so last summer he flew out to Los Angeles and says it's the best thing he has ever done. “I absolutely loved my time in America,” says Jamie. “I travelled around Southern California and was also based in Arizona for a few weeks but found this tough as it was incredibly hot. My favourite place was Los Angeles and I got to see all the sights.
Jamie takes in the Grand Canyon
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Jamie loved his time coaching football at the summer camp
"I was nervous going there as I’ve never been that far away from home by myself. My mum was worried I would forget to take my medication , but I did remember to do it. I wasn’t worried about my liver condition as I don’t let it hold me back. It was an amazing trip and if it wasn’t for Covid I would have gone again this summer. I really hope to get back next year.” Pamela is delighted that the trip lived up to expectation – and even more pleased that they both coped with the 3000 mile distance. “I did get used to it,” she admits. “Jamie knew he just had to take his own meds and was surprisingly good at keeping in touch. We did regular video calls so he was able to reassure me that he was looking after himself as well as tell me what a great time he was having! "To any other parent who has the same concerns as me in a similar situation, I would honestly say ‘let them go’. Trust your child and give them the chance to show you they can cope without you nagging them. It will actually be good for you both.”
Zoe Taylor, a psychologist who specialises in transition at Birmingham Children’s Hospital says that Pamela’s feelings are shared by many in her situation. As parents we look towards the new stages for our child, their first steps, starting school etc. and encourage and celebrate with them. However new stages can also bring worry about how their child will manage. What if letting go means they aren’t safe?
For parents of a child with a liver condition, you experienced your child’s life in danger so it is natural to want to protect them. It can feel scary to think about stepping back and normal to feel a loss of control and like you are not able to protect your child. Being the primary care giver is an exhausting job but something we come to feel comfort and safe in. Gaining independence is a natural progression and encouraging realistic levels for their age, abilities and limitations is important. Your role changes from primary care provider, to providing emotional support as your child learns to manage their own life and health. It is OK if this feels tricky to allow trust your child with this increased responsibility and negotiate new ways of doing things. Parents are role models for a child at all stages and your child will learn new skills from your actions. At times you might feel like you’re being pushed out or pushed away but your role is incredibly important in helping them grow. Remember that your child is able to display these independence skills because of your support and help.
Tips to help parents let go Acknowledge how you are feeling, it is normal, valid and OK to find letting go hard. Reach out to others in the same position and talk about your concerns - look after yourself and be kind. Your child is changing - help them learn by watching you, trying out and encouraging. Give them ample opportunities to see skills modelled for them as well as practice new skills. Reflect on what it felt like for you at their age. Your child might push back and not understand how you feel and this might create some tension. Be honest with them, tell them you are finding letting go hard. Part of letting go is reconnecting with yourself and what you may have lost or given up in your parenting journey. This might feel scary but putting some focus back on you can be a positive step.
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Emma pedalled for Pudsey
Many of you will have seen Emma on TV last November as she was one of the young people selected to take part in The One Show’s Rickshaw Challenge to raise funds for BBC Children in Need. CLDF has received funding from Children in Need since 2011 for our children and young people’s support programme and Emma, who was then 18, was one of a team of six, chosen from many nominees, who took part in the eight- day challenge which began in Holyhead and finished at BBC Elstree Studios during the BBC Children in Need Appeal Show. Emma describes it as an unforgettable experience which brought many benefits. “I had done so much swimming when I was younger but due to a seizure I suffered in 2017, I had to learn to walk again so really hadn’t been training at the same level. Taking part in such a tough challenge made me realise that I actually could get my fitness back. It was also great being part of the team. We all got on so well and learnt to support each other. In fact we called ourselves the Rickshaw Family and are still in touch with each other!” In addition to the physical aspect of the challenge, regular TV and radio appearances meant Emma discovered skills she didn’t know she had.
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“I was nervous about doing all the publicity, especially when it was live, but I loved it,” she admits. “As part of the project, I had to address the Strictly Come Dancing audience about my liver condition and the part CLDF had played. It was a scary prospect, but the audience were lovely and I got really positive feedback from the judges and professional dancers. I have been a fan of that show all my life, so that really meant a lot to me. "I found that from doing things like this, and from the Rickshaw Challenge overall, I have gained massive amounts of confidence in myself, which I have now taken into my everyday life and is extremely helpful when faced with new situations and experiences. “It was great to help get national attention for CLDF and for childhood liver disease in general and the whole experience has made me much more comfortable about presenting and public speaking, which should be helpful to me in the future as I am now at university doing a Primary Teaching degree.”
2019 IMPACT REP RT There are a huge number of different liver diseases which can affect babies, children and young people. The causes are largely unknown; many are life- threatening and all require a lifetime of medical care.
Children’s Liver Disease Foundation exists solely to support the needs of UK families affected by childhood liver disease by: funding and supporting vital research informing and educating healthcare professionals, parents and the public about childhood liver disease and the signs and symptoms campaigning to give young people and their families one strong voice providing young adults, children and their families with tailored support services
“Our vision is a world in which young adults and children are not limited by their liver disease; that childhood liver diseases will be understood, prevented and treated effectively, ensuring that babies, children and young people with liver disease can achieve their full potential.� Alison Taylor, Chief Executive
Research
8 applications
Research lies at the heart of providing a brighter future for children with liver disease. CLDF ran two grant rounds in 2019. The first was focussed on projects relating to Donor Specific Antibodies, an issue which impacts children receiving liver transplants. This was awarded to Dr Girish Gupte of Birmingham Children’s Hospital. Three further projects were funded in an open grant round.
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In 2019 we formally launched CLDF Research Hub to promote research in paediatric hepatology and enable families and young people to provide real life insights to support further research and research design.
33 parents & YPs recruited and trained
2019 Grant Rounds
18 projects & opportunities supported
Education and Information The provision of information to children, young people and their families is critical. Our information is available in leaflet form and via our website. We have continued to review and develop our medical and support leaflets to ensure they are concise, patient friendly and updated with the latest information. New publications have also been developed. These include new guides for Hepatitis B, education support, sibilings and healthcare professional packs.
8 conferences attended
109,000 support & medical leaflets distributed
75% increase in Yellow Alert Activity
We use the yellow alert pack and all agree that it is a fantastic resource with lots of useful information. The stool charts are used regularly in consultations and are valuable to show parents what to look for.
feedback from a GP
Our Yellow Alert campaign was updated and relaunched during the year, with 13,868 resources distributed.
....it gave me a much greater understanding of her liver disease and that helped me to become a better,'more together'parent
Supporting families and young people A diagnosis of liver disease has a huge impact upon a child and everyone around them. The journey is individual. CLDF’s role varies according to needs; from helping families to find their new normality to supporting young people to take responsibility for their liver disease/transplant and ultimately transfer into adult services.
We attended
Throughout 2019
88
900
Connecting with
families & young people
hospital clinics across the UK
915
young people had contact with CLDF
23
Woodland shelters were built She understands her own body more and talks more easily about her condition without getting as emotional as she usually did
Voice
We also had
2,375
contacts with parents, friends and relatives.
At our CLDF events in 2019
12
Young people
made films about their liver journey
I got to meet and share my journey with people who genuinely understood where I was coming from. All the activities allowed me to feel really included and have a good time
58
Mocktails were created He was like a different person when I I came to pick him up. I think this is because of being with people who had similar conditions to him
Representing the needs of our families and young people has become an increasing role for CLDF over the past decade. During 2019 we have ensured that families and young people are given the opportunity to become directly involved in the evaluation of national policies and developments through a wide variety of channels. We are actively involved with a wide variety of consultations and groups to ensure the needs of children, young people and families are heard.
Fundraising CLDF works hard to attract income that can be used to deliver our objectives. CLDF works across all traditional fundraising income streams and benefits hugely from funds raised by the families themselves.
During 2019 we received donations from:
A HUGE
Big Yellow Friday activities, raising £66,787 201 diners at our Gala Dinner spending £111,403 BP garages partnership generating £ 27,756 Marathon & Great North running - £62,462 Regular givers, cake bakers, parachute jumpers, carbooters, singers, head shavers, knitters, raffle sellers, gamers, too many to mention
THANK YOU to everyone who donated and raised funds for us in 2019. We could not do the work we do without you.
Cake bakers, head shavers, raffle sellers,
Funding CLDF's work
Cake bakers, head shavers, raffle sellers, Incoming Resources
Resources Expended
Investment income
£352,590
£13,529
Fundraising and publicity
Restricted Voluntary Income
Emotional support and activities
£226,233
Research
£184,857
Information and Awareness
Unrestricted Voluntary Income
£654,607 Total: £852,993
£187,171 £111,587
Total: £877,581
It has been absolutely amazing to hear your own struggles and experiences reflected in other people. It really made us feel included and not alone Registered Charity No. 1067331
Scotland 3431169
Company No. 3431169
childliverdisease.org
My liver disease didn't stop me.....finding a plan B
Constance has always loved flying and knew from a young age that she was determined to join the RAF. That dream came to an abrupt end last year, when aged 17, she was diagnosed with autoimmune liver disease. “My first inkling that something was wrong was when I flew from England to visit my mum in the Canary Islands and she told me that my eyes looked yellow,” explains Constance. “Following a trip to the doctor, I was referred for tests and the end result was being at Kings College Hospital London, receiving my liver disease diagnosis. That wasn't nice, learning that I now had to cope with a lifelong medical condition but what was even harder was realising that this meant I couldn't join the RAF. i had never wanted to do anything else and I felt I had just been told to start all over again. " Constance was put in touch with CLDF and in February took the opportunity to join other young people at the film-making workshop, Talk Tell Transform. “Up until that point I thought auto-immune liver disease was really rare, then I discovered that there’s plenty of us!” she says. As well as telling her story in film (which you can see at childliverdisease.org/young-people/talk-telltransform/films) Constance made some good friends that week. When she returned, she started to think about what her career path should be.
“Having lived in the Canary Islands where the education system is different, I had already taken my A levels . So I looked through all the university courses and discovered aerospace engineering. That really appealed. I thought ‘if I can’t fly the planes, I’ll build the planes. .' I got accepted and now here I am in Leeds!"
Scotland 3431169
Constance is now at Leeds University
Of course, this year has brought additional challenges for Constance and other young people. "As soon as lockdown happened I had to isolate,” she says. “Fortunately, I had made some really good friends at Talk Tell Transform and we were in constant touch all the way through it and helped each other along. I particularly bonded with Mollie and Gemma and as soon as restrictions eased, we all went for a camp out in Gemma’s garden! “University of course is not how we expected it to be due to all the restrictions, but I had got to know people on my course before we even started through social media and now I can meet them in person. Aerospace Engineering is a really interesting course with loads of career options. And I am hopeful that by the time I graduate, people will start flying around in places again!" "What happened to me was definitely rubbish, but I think my plan B is a good one. My dad always says ‘if you fall off the horse, you have to get back on again’. I feel I have done that and although this has been a very strange year, things have got to get better!”
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Fantastic Fundraisers Delores and friends conquer Snowdon Delores McPherson persuaded eight of her family and friends to climb Snowdon with her last October in support of her son Keiran , who has auto-immune liver disease. Her original target was £500 but they raised almost £2000 for CLDF. “It was amazing,” says Delores. “We somehow managed to pick a lovely sunny day which meant that the climb to the top was really worthwhile because of the amazing views. And it was heartening to see that when other walkers realised what we were doing and why, they gave us donations.”
Frankie's knits notch up a fantastic total Creative knitter Frankie Brown , who was inspired by the support which CLDF provided to her friend's family when her son was diagnosed with biliary atresia 12 years ago, has notched up over £20,000 for CLDF by making her patterns available in exchange for a donation. Frankie posts her designs on the knitters’ website, Ravelry. “I’m really pleased about the fundraising total,” she says. “I would design patterns anyway but watching the total slowly grow definitely spurs me on when I'm tired!”
School runs their own London Marathon Andy Hutchings, head teacher of Parkgate School in Cheshire had signed up to run the London Marathon for CLDF in support of one of his pupils, Imogen. When the event was cancelled, the school decided to put on a 'Parkgate Runs the London Marathon' event. Around 400 pupils, staff, friends, families, and dogs, pledged to run, jump, or hop 200 metres each. Enough people took part to complete two laps of the marathon course and they raised a fantastic £2644.
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James inspires fabulous facebook fundraiser Rebecca and Daniel Gregory launched a facebook fundraiser for CLDF when their baby son, James, was placed on the transplant list on Christmas Eve last year. Happily James received his new liver in March and is doing well. And his parents’ fundraising now stands at a fantastic £5,800. Proof that you don't have to run a marathon or jump out of a plane to raise funds - unless you want to of course!
Gemma’s funky face masks Gemma Holdsworth decided to do her bit to help prevent the spread of Covid 19 by making wonderful face masks in return for donations to CLDF. "My family are long term supporters of CLDF as they provided essential support for us when I had my liver transplant in 1994 and continued to do so throughout my childhood and beyond", explains Gemma, who has raised £125 to date.
Rohit racks up 100K Rohit Raina raised £1663 by completing the Blackhall 100, a 100K ultra trail marathon along the sunshine coast of Queensland. ”I found out about the support which CLDF has provided for my nephew Noah, who has biliary atresia" he says."I wanted my first 100km race to be special, do it for a cause, and I couldn't think of a better cause than this."
Will you help us raise £500 this Christmas? This year has been a tough one for fundraising as so many events have been cancelled but sending a CLDF digital Christmas card this year is a quick and easy way you can help us raise funds and awareness. You can make a donation with the money you save on cards and stamps, choose a design, add your message and then share the goodwill with everyone you know on social media. Simply go to https://uk.virginmoneygiving.com/ChildrensLiverDise aseFoundationChristmasCards and help us hit our target of £500 festive funds.
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In Loving Memory
Colin How
Muhammed Azan Iqbal (Momo)
28th Nov 1989 – 14th July 2020
10th July 2007 – 4th September 2019
“Colin was the most thoughtful, caring, loving son, brother and uncle. He had a heart of gold and would do anything for anyone. Colin loved to laugh, he lived a happy life and lived it to the full. We will hold onto every memory and keep him close to our hearts always.”
"Muhammed, known as Momo to his friends, was amazing . He was due to join Year 8 the day he sadly passed away. We are much obliged to all team members, social workers, teachers, friends ,family and CLDF for their support throughout his life time. Because of these people, we have been able to spend lovely time with our son."
Anna Caroline Burnett 11th May 1985 – 15th June 2017
“Although Anna was only with us for a short time, she made a huge impact on our lives and everyone she met. She adored life and everyone adored her. She was the most caring, loving and generous young woman, bright and multi-talented. She is held deeply in our hearts forever.”
Joshua Leo Lord 26th February – 24th December 2019
“Joshua was a happy, calmnatured little boy with big blue eyes. He was always smiling despite ongoing medical intervention. He loved spending time with his older siblings who would do anything for him. Joshua brought so much happiness to his family. He will be forever missed and remembered with love.”
Leonidas Anthony Frampton 6th February – 22nd November 2019
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Dominic James Boyland 30th Jan 2007 – 6th January 2020
“Dominic was the kindest and most thoughtful young man that we couldn’t have been prouder of. Everyone who met Dominic instantly liked him, and couldn’t believe how wellmannered and polite he was. Mammy and Daddy are so proud of you Dominic and can’t wait to see you again we love you so much, forever and always.”
Emma Louise Brammall-Lyon Matthew James Modley
Tyler Jones
13th May 1973 – 15th February 2007
11th October 1985 – 30th April 2016
14th Aug 1985- 27th July 2020
“My beautiful baby girl who fought right through to the very end, she was and always will be my Trooper, I called her my trooper everyday of her life. Miss you so much baby girl, love you always, Mum”
A thank you to Lucia One of the young people we remember on these pages is Lucia Quinney Mee, who died just days before her 21st birthday. In her short life, Lucia took every opportunity to raise awareness of childhood liver disease and the need for organ donation. She was an enthusiastic fundraiser, she attended and also volunteered at CLDF events, most recently last October when she spoke to parents at our Northern Ireland Weekend about her experiences as a young person with a liver condition. Lucia’s mum, Rachel, says that giving was in her nature.
Lucia Quinney Mee 28th May 1999 – 24th May 2020
“From a baby she responded warmly to anyone taking an interest in her! So it felt very natural to her, having received such amazing care from everyone in hospital to give what she could back. She had a profound sense of gratitude. Life was always a gift for her and Lucia received it and loved it that way.
After her first transplant that sense of gift became deeper still. Lucia knew she owed her life, her new life, to the courage and kindness of others and was always aware that it was through the gift, in death, of another that she was able to become who she was. Knowing she could never take life for granted encouraged Lucia's determination to live it more fully, and do what she could to help others, particularly those in need of the same life-saving gifts of transplants. So she always just said yes to invitations to speak, participate in panels and workshops, write, etc, because, well, why would she not?” We are very grateful for Lucia’s generosity of spirit which benefitted many others. Our sincere condolences go to her family and the families of all the children and young people on these pages.
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Big thank you to our young fundraisers Once again, our young people have done us proud. Whether they have a liver condition themselves, or are fundraising to support a sibling, they have navigated their way through this year’s restrictions to do what they can to support CLDF.
Katie shares her story on Big Yellow Friday Eight year old Katie decided that Big Yellow Friday would be the perfect opportunity to raise awareness and funds for CLDF at her school. So she prepared a Powerpoint presentation for assembly and, helped by her brother Adam, shared her own feelings and experiences about living with a liver condition. “She and her brother did a fantastic job, the teachers and pupils were really impressed and the school has raised £200,” says dad, Darren. We’re impressed too Katie and Adam – great work!
Ada picks up mum’s challenge When five year old Ada couldn’t go to London to watch her mum, Emma, do the London Marathon, the keen runner grabbed the chance to do the 2.6 mile challenge instead. The carefully planned route through her home town of Allerton Bywater not only brought local people and the press out to cheer her on but raised a fantastic £3940 for CLDF. A tremendous total for those two little feet – go Ada!
Dan delivers on 100K cycle stint Seven year old Dan cycled a whopping 100km during July to support CLDF. “He wanted to take on a challenge and raise funds for a charity who had supported our family directly,” explains mum Sarah. “Completing this distance around his home learning and our work commitments was certainly a challenge but he really enjoyed it and was totally amazed at how much he raised.” We’re amazed too Dan – £2504 is a fantastic total!
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After a couple of years, however, I started to walk with a limp and my left hip withinPearthes’s Disease, s a crumbling of the ball and socket joint . This was I clearly recall the drama of being an
Imogen’s treadmill marathon Eight year old Imogen decided that lockdown was a good opportunity to take on My May Marathon and completed her 26.2 miles on her home treadmill in less than three weeks. She stormed through her fundraising just as effectively and raised a fantastic £1083. This is great going Imogen – clearly a future London Marathon runner in the making!
Charlotte’s musical medley Eleven year old Charlotte beat the boredom of shielding by setting herself a sponsored musical challenge – to learn 26 new pieces of music on her clarinet in 26 days. She completed the challenge, raised an amazing £1477 for CLDF and rediscovered her love of playing the clarinet. That is music to our ears, Charlotte, well done!
Macsen’s pedal power During the first Wales lockdown, 11 year old Macsen cycled the equivalent distance from South to North Wales – 170 miles - in a matter of days. He then set himself further virtual challenges so has not only clocked up 415 miles but raised an amazing £922 for CLDF. “The charity is close to Mac’s heart as he has Alpha 1,” says mum Rhianydd. “And he wanted to help support those not as fortunate with the condition as he is. He was amazing and we are so proud.”
Sooty says...Izzy whizzy lets get busy Big Yellow Friday takes place on March 5th 2021 - that’s really just around the corner - this year we need your yellow themed fundraising more than ever! Whether you decide to make, bake or create, be sponsored and socially distant at work or have fun in your school or nursery bubble, we don't mind, we just want you to join in the fun and so does our favourite yellow celebrity, Sooty! So if you need some inspiration or just want to tell us your plans, please contact us at fundraising@childliverdisease.org
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How we fund research CLDF has spent over £9 million on research funding since 1980. Most of this money has been donated by families, friends, relatives and other supporters. We aim to support research that will contribute significantly to a subsequent larger research grant proposal. Projects may focus on; gaining insights into the causes of liver disease, improving diagnosis, management and long-term outcomes. Every year, CLDF’s Trustees, CEO and Scientific Committee agree on the level of funding that we are able to spend on research in the form of grants. The decision to award funding is made by CLDF’s Scientific Committee. They are a group of experts who ensure research funded by CLDF is likely to have a positive impact on children with liver disease and their families. The committee includes parents of children affected by liver disease. Here Professor Salim Khakoo, Chair of CLDF's Scientific Committee, explains more about how research is funded by CLDF and how the committee makes its decisions. What are the key things the committee looks for in research proposals and applications? We look at a number of things. Firstly, the project must address an unmet need in children’s liver disease. Secondly it should be scientifically strong so that something new is generated. This may be new scientific knowledge or a new resource for the community such as an app or a registry. Finally, the project must be achievable. Achievability can have many aspects, including the make-up of the team doing the research and also whether the research can be completed within a reasonable timeframe. In this respect, it is ideal to have several centres involved so that resources can be pooled making the project more efficient and building on a wide variety of expertise. We actively encourage this outlook in order to add value to any research projects undertaken.
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How do the views of those affected by childhood liver conditions feed into the committee’s decisions? it is really important to have the views of those affected with liver disease and their parents giving input into our research. Hence, as a scientific advisory committee we were delighted that the CLDF have set up the Research Hub. We especially value applications that have had input from patients and carers into their design. We have a balanced scientific committee that brings together clinicians looking after children with liver disease, who can give insights into their needs, as well as scientifically excellent researchers, who can comment on the scientific value of each proposal. The lay member on our panel actively contributes to the discussion of each proposal and scores all the applications at our panel meeting in the same way as the other members. It is very important that the lay member agrees that the application is of sufficient relevance to the children’s liver disease community before we can agree to fund it.
Where do you think we are in terms of research into paediatric liver conditions? We are definitely making progress, and this has in part been driven by our understanding of the need to perform more collaborative research. This is important in order to pool research resources to maximise the knowledge gained from a discrete piece of work. The technical revolution in genetics and DNA sequencing has made a huge impact on our understanding of simple genetic diseases. New technologies, such as stem cell technologies and the development of improved methodologies to analyse large sets of data could bring about a much better understanding of mechanisms of more complex children’s liver diseases. However, we do have some way to go, as most diseases we are trying to address are relatively uncommon within the population. Additionally, developing new therapies is by definition very challenging as these take many years to get to the market. I am hoping that computer-based methodologies can in some way help to speed things up by developing new tools to model diseases and treatments better. Research from these types of projects can identify key areas to focus on when doing patient-centred research and so streamline these research projects.
Where would you like CLDF to be? I would like us to be at the forefront of defining the research questions that need to be answered by the research community. As we are a relatively small organisation the number of questions that we can definitively answer within our funding envelope may be relatively limited, but that doesn’t mean that we can’t generate important data to prime larger research grants, or answer well defined research questions. Our community is expert in understanding the key areas that need to be addressed, and it is important that we use this knowledge to leverage the wider scientific community.
On a more practical level, it would be great if we could support some more PhD projects. These have the potential to make a much bigger impact on liver disease than our small grant funding. Often an investigator can find matched funding for a PhD project which means that this gives a multiplier to the funds of CLDF. Also, they can encourage researchers to take an interest into children’s liver disease and hence support the development of the community researching into children’s liver disorders. This will be really important for keeping our research program sustainable. One thing other research organisations have is a Grand Challenges program, which brings together researchers from many disciplines to focus on a single problem. Perhaps we could think about this for children’s liver disease.
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Supporting families for 40 years We’re very proud that CLDF has been supporting families affected by childhood liver disease for 40 years this year. And while the pandemic means that we are not quite able to celebrate this as we would have liked, over the next few months, we shall be sharing stories from those 40 years on our website. Here is the story of how and why CLDF began. In this moving article we have reproduced from The Sunday Times in 1979, Peter and Sonia McGough explain why they started The Michael McGough Research Fund. Our son Michael was born in May last year. For two months he was a model baby. How soon and how violently this idyllic state was to end. Michael’s complexion had taken on a jaundiced pallor. At nine weeks he was admitted to hospital for tests to determine the cause of the jaundice. After two weeks of rigorous and painful tests, the general view was that Michael could have some form of serious liver complaint. The only way to find out was to operate and have a look. The surgeon spoke to us upon completion of the operation. Within seconds Michael’s expectancy of a normal life span was reduced to a painful few months. He had been born without bile ducts and would die from cirrhosis of the liver during infanthood, Michael’s reaction to the operations was severe. He was to spend the next six months in hospital, come close to death several times and undergo another operation.
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In January he came home to all intents and purposes to die. Almost from the first week of being home, Michael’s general health started to improve. He became stronger, more playful and loving.
Most of all it was this ability to love and to inspire love that set him apart. He was always trying to kiss and cuddle us and when we showed affection to each other this doll child would smile and chuckle encouragingly. How this angelic nature helped to alleviate the pain of knowing he would never go to school, ride a bike or have his own family. He became so precious that we could no longer bear the thought of losing this special son. We had been told that his only chance of life was to undergo a complete liver transplant, which is not available to children in Britain because of lack of research to develop the required specialised transplant techniques. Had we the right to subject a child to a transplant? We deliberated over the final equation. Do nothing and he will certainly die and die in pain. Do something and maybe, just maybe, he will live. We contacted Dr Thomas Stargl of Denver, the world leader in liver transplantation who, after a period of weeks, finally agreed to accept Michael for a transplant.
We arrived in Denver in late September and Michael underwent two further operations as a prelude to the transplant planned for midOctober. After completion of the second operation on October 3, Michael suffered a heart attack and died in the recovery room after an hour-long fight to save him. We asked to see our son for the last time. We saw him in the sterile surroundings of the recovery room. His ravaged body was covered by a surgical gown, his large saucer eyes were closed, his suffering over. Our special son was at peace, aged 17 months. Our special son. How many other special sons? We were to find out that each year in the UK alone 400 babies are born with liver disorders. Can what Michael went through be, in this, the 20th century, multiplied so many times? We also know that there is a chronic lack of funds to help children so afflicted. Only by private endeavour will money be channelled towards liver research for children. That is why, in conjunction with other parents who have lost children like Michael, we have pledged to raise funds for children’s liver research. One day, not soon, but one day, these special sons and daughters will live and when they do it is hoped that the parents of previous special children will have played a part. In this way the traumas experienced by children like Michael will not have been without reason.
The early days Barry Barton, the first director of the Michael McGough Foundation, which later became Children’s Liver Disease Foundation, takes up the CLDF story: “In 1977, the youngest of our five children, Sarah, who was eight and a half, became very jaundiced and was vomiting blood. She was transferred from our local hospital in Surrey to Kings College Hospital in London which at that time was the only hospital in the UK offering a service for paediatric liver disease. (Continued overleaf) Barry and his wife Pam with Sarah in 1980.
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Continued from page 31 After many tests she was diagnosed with autoimmune chronic active hepatitis, portal hypertension and cirrhosis of the liver. This led to many years of admissions to Kings and visits to outpatients. At age 22 she had a liver transplant in the adult liver unit at Kings. Sarah is now 51 and married with a 14 year old daughter. Other than being on immunosuppressants, she leads a full normal life.
At the time Sarah became ill, Sonia and Peter McGough had been successful in raising funds to take their son, Michael, to the USA for a liver transplant. Sadly, he died in the USA before that could take place. When they returned to the UK, they got in touch with Kings about how best to use the balance of the money that they had raised. The suggestion was made that the money could be used to set up a charity to promote research into paediatric liver disease and provide support for affected families. It was agreed that Kings would write to all the families who had had a child treated for liver
Sarah with her husband Darren and daughter, Maddie on their wedding day in 2018.
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disease at the hospital, inviting them to attend a meeting with the aim of setting up a charity. There was an enthusiastic response to this and the necessary steps were taken to create the charity. It was at this first meeting that we met Sonia and Peter McGough.
We felt very beholden to what at that time was the very small medical team which was taking such good care of our daughter. We were one of the first families to organise a local fundraising group with our family and friends. Thanks to much hard work, many kinds of fundraising activities and constant support from our local newspaper we were able to raise a significant sum of money over a period of eighteen months. As a result of this success, the Trustees asked me to take on the role of Director of the charity. In those early years we faced the problems of lack of public awareness and shortage of funds. The only literature we had was a leaflet outlining the functions of the liver, the multiplicity of paediatric liver diseases and the aims of the charity. Over the years it has taken many hours of discussion to produce the excellent range of literature that is now available to families and health care professionals. I also reflect on how high the mortality rate was for children with liver disease when we started the charity, what little was known and how it has improved. I am pleased that the hard work of the early members has led to the development of such a successful organisation. I am sure that they would be delighted to know that parents now have access to medical expertise and a wealth of information which was simply not available 40 years ago.
Clare features on the front cover of CLDF’s first supporter magazine, CHILD, which was published in 1990. Aged seven, she had just had a liver transplant at Birmingham Children’s Hospital.
Clare's story
“As a child, I understood that I was unwell and the severity of my condition. The fact I could quite easily die was kept from me, but my parents and family made me aware I was quite ill and that was why I could not always do what the other children were doing. “When the staff at the hospital explained to me and my parents that I needed a new liver, even though I was only seven, I remember feeling scared. Was it going to hurt? I think my main comfort was knowing a member of my family could always be next to me.”
Clare featured on the cover of CLDF’s first magazine
Whilst Clare was comforted by the thought of her family being nearby, it was very different for her parents.
"It was a parents’ worst nightmare and we knew no other parents at the time who were going through this until we were in hospital with Clare.
“We both felt very scared as we had seen her be ill almost as soon as she was born”, says Clare’s mum Debra. “We had been through some tough experiences as a result of her being so ill, and then to being told she needed a liver transplant, was just terrifying. We knew if she had the transplant and all went well she may be saved but everything was such a gamble in those early days.
"Fortunately, Clare’s transplant was a success and although she admits that she found school difficult, due to the amount of time she had missed, as a young adult, she became determined to make the most of the chance she had been given.
Clare today with her husband, Stuart and children, four year old Callum and newborn daughter, Sophie.
“I met my donor family and I was so moved by their courageous decision at such a heartbreaking time, it made me even more determined to live my life to the fullest and make not only my family proud but them as well. I have travelled the world, got a degree and I am happily married with two beautiful children. “The main message I would send to parents now is please don’t lose hope. My transplant was done 30 years ago, when the field was in its infancy. Transplant medicine has moved on so much now, and those of us who’ve gone before have provided research evidence to further support the amazing work that the doctors do. My own life has been blessed and I am grateful for every day that the donated liver I carry has given me.”
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New support leaflets for parents In February this year CLDF introduced two new leaflets designed to help parents support children with a liver condition. ‘Support through your child’s liver journey’ contains information on all aspects of living with liver disease, from top tips for clinic visits and hospital stays, to how to access financial support and what to consider when going on holiday. ‘Supporting Young People’ which is aimed at parents of children aged 13 and over, includes guidance on supporting your child as they grow up, moving into adult services, prescription charges and available benefits. “There are so many issues which parents need to consider following a diagnosis of liver disease, that we thought it would be helpful to bring them together into one leaflet, depending on the age of the child” explained CLDF’s Information and Research Hub Manager, Harpreet Brrang.
“We’re really grateful to Kings, Leeds and Birmingham Children’s Hospitals who helped us produce this information and the parents and young people who contributed a wealth of advice based on their own experience.” Copies of the new leaflets can be ordered or downloaded from the website childliverdisease.org/liver-information/supportinformation
Joanna joins prescription charge battle As part of the Prescription Charges Coalition, CLDF, together with other charities, has been campaigning for exemption from prescription charges for people in England with long term health conditions. So we were delighted when one of our young people, Joanna agreed to feature in a Radio 4 documentary on the subject. “I feel strongly about the fact that people with long term conditions, especially us liver transplant patients, have to pay for prescriptions,” explains Joanna, 23. “It’s never seemed fair to me that as soon as I turned 18 I have had to pay for medication for a condition that I was born with and is not my fault. “Making the programme involved speaking to a journalist, and then interviewing experts in asthma nursing, a lady from the Prescription Charges Coalition, and a pharmacist. Then I went to BBC Broadcasting House in London to record the links. .
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“The whole experience was really exciting and allowed me to share my voice and opinion on the matter.” ‘My Name is Joanna’ was broadcast in February. Unfortunately, we still have no positive news to report on prescription charges, but we shall continue with the campaign and will keep you updated.
Joanna featured in a Radio 4 documentary on prescription charges
Will you help CLDF to continue to transform lives? Every week in the UK, 20 children will be diagnosed with a life-threatening liver disease – the equivalent of nearly a class. CLDF is here helping them pick up the pieces. We’re working with families and young people every day, helping them take control of their lives, supporting them in their complex journey by providing accurate, easily understandable information, listening to their feelings and worries, building their resilience and self-esteem, and transforming their lives by creating a new life path, undefined by their liver disease. And our research programme provides transformation by giving real hope of a different future. We’re determined to continue to be here for every family and young person who needs us during these challenging times. But Covid 19 has stopped all community fundraising and challenge events which means we’ve lost nearly £300,000 this year, and next year doesn’t look any better. We’ve made cuts and changes so we can continue to respond to your needs, but we’re concerned that service cuts might have to be made if our income continues to fall. Already, any new research is suspended.
Chris and his son Noah
You can help and here’s how: A donation is literally a lifeline – see overleaf for how to donate: £10 funds our support team to answer a call from a parent or young person desperate to be heard. £15 funds a new parents information pack so they’re not alone. £25 funds an education pack supporting a child to have the education they deserve. £100 funds an on-line support session facilitated by our trained support team. Tell family and friends how important CLDF is and ask for their help – whether it’s a donation, or an ask to a local club or company to make us their chosen charity or join in with Big Yellow Friday (see p27). Join the world of virtual fundraising events may be out but fundraising online is most definitely in! It’s easy to organise and can be great fun, as Chris Williamson has discovered. Chris, whose son Noah, had a liver transplant at the beginning of the year, has done all of his fundraising through his workplace, first direct, and on LinkedIn. He has braved a sponsored haircut at the hands of four year old Noah, and is now embarking on his Advent Challenge. “Each day in the run up to Christmas I’ll open a virtual advent calendar door with a challenge that I’ll complete that day,” he says. “And here’s the best bit, if you donate, you get to come up with the challenges and I'll not know what's in store. I’ll video my reaction to finding out each day as well as the challenge itself for your entertainment over lockdown!”
Could you be as creative as Chris? If you’re in need of ideas or would like to share yours ,please contact fundraising@childliverdisease.org. We would love to hear from you and you really will be making a difference!
35 Liverlife
You can make a difference Now, more than ever, your donation will have a real impact on the work we do to transform the lives of children and young people with liver disease. Simply fill in the details below and return this page with your cheque to CLDF, 36 Great Charles Street, Birmingham B3 3JY. Title______ Full Name ____________________________________________________________________ Address ________________________________________________________________________________ ________________________________________________________________________________________ Post Code _____________________(We need this to claim Gift Aid if you are a UK taxpayer). Email___________________________________________________________________________________ Phone Number __________________________________________________________________________
If you prefer, you can make a donation online at childliverdisease.org/donate.
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Keeping our records up to date enables us to make most effective use of our resources. If we don’t have your up to date address, telephone number or email, please let us know at childliverdisease.org/contact-us or call us on 0121 212 3839.
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All your details are safe with us. You can read full details of our Privacy Policy at childliverdisease.org/privacypolicy
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Children's Liver Disease Foundation
36 Great Charles Street, Birmingham, B3 3JY 0121 212 3839 | email : info@childliverdisease.org website : childliverdisease.org Registered Charity Number : 1067331 (England & Wales): SCO44387 ( Scotland) Registered Company Number : 3431169 | ISSN 2398-3485
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