Issue 09 Summer 2022
Front cover: Breakaway 2022. See story p4. Photographer: Brian Irvine
CLDF was greatly concerned by the outbreak of acute paediatric hepatitis cases in early 2022 and have done all we can to work with clinical and research colleagues to better understand the outbreak and to ensure families know we are here for them. This summer we were delighted to have resumed our outdoor adventure residentials, Breakaway and Wild Camp. It has been an absolute joy for the team and for our young people to have met in real life for the first time in more than two years, supporting one another to develop their confidence and step out of their comfort zones after the challenges of the pandemic. In February 2022 we were delighted that NICE approved a new game-changing drug for the treatment of children with PFIC. The treatment will ease symptoms for children with the condition and improve their quality of life. This result is testimony to the tenacity of families who participated in the appraisal, and our former CEO Alison Taylor. We have continued to see high demand for information and resources about liver conditions, and we have been continuing to steadily expand the reach of our campaign
for the accurate early diagnosis of prolonged jaundice in newborns: Yellow Alert. The last year has very much been a time of transition for the organisation, both in terms of adapting to the impact of the pandemic on fundraising and service delivery, and with changes in leadership upon the departures of CLDF's longstanding CEO, Alison Taylor. Change is both challenging and an excellent opportunity to reflect on what is most important to CLDF and our families, and we will be reaching out to you over the coming year to develop the ideas and plans that will best serve your needs.
I must express my sincere thanks to Katherine Myles who has acted as interim CEO over the last six months and now look forward to working with the board of Trustees, staff and volunteers, as well as meeting and learning from young people, families, supporters and clinicians throughout the UK. It’s a privilege to be part of such a well-respected organisation. Wishes Rebecca ceo@childliverdisease.orgRebecca
Warm
WELCOMEWelcometothe2022editionofLiverlife. liverlife2
Firstly, I must say a huge thank you - having joined CLDF as the new Chief Executive in July, it’s wonderful to have received such a warm welcome. It’s certainly been a memorable first few weeks, which have been both hectic and enjoyable at the same time. As part of my induction, I have been reflecting with the team on the successes and challenges of the last year.
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How support works in 2022 Making things
HOW SUPPORT WORKS
It’s been very exciting this year to see the start of a return to real life events. After a break of two years, we were delighted to be able to bring ten young people away on CLDF’s Breakaway residential just before the Jubilee Bank Holiday.
IN 2022
Instead we find that new families, having been told about CLDF by the specialist centres, are contacting us directly. I also have a regular meeting with the clinical nurse specialists at the liver units so we can keep them updated on developments.
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“We’re unable to go to clinics at the moment and in fact most hospitals have still not returned to using waiting rooms.
“It’s become really apparent that families benefitted from our emotional health and wellbeing inputs during lockdown and we’re currently working with the psychology team at Glasgow children’s hospital to develop a programme specifically aimed at parental mental health which we are looking forward to rolling out in September.
“CLDF’s support work has changed over the past two years and continues to evolve but we are always listening to what our families and young people want and working to meet their needs with the resources we have available.” events combine with virtual catch ups
“We know how much our families have missed seeing our team and each other face to face,” says Michelle. “And while it’s been great to put on two events this year, we don’t currently have the resources for more, so we are still providing support via telephone calls and Zoom to ensure we can be there for our families and young people when they need us.
As we go to press, plans are well underway for Wild Camp when we’ll be bringing 10 children, each with a parent, on an adventure in the Derbyshire countryside. Look out for reports on our website!
Real life
Twelve year old Nathaniel described Breakaway as: “Going on a small adventure with people who understand what it's like to have hidden disabilities,” and added: ”It was easy to make friends with everyone and I feel like we bonded pretty well.” His mum, Clare, was equally enthusiastic: “He had a great time, doing things he had never tried before,” she said. “And realising that he could manage his health condition without us was great for his confidence.”
“It was wonderful to see our young people having fun together, particularly those who had not been able to take part in trips like this before,” said Head of Support, Michelle Wilkins. “Whether it was building shelters, making food, joining in campsite games or tackling the high ropes, they all joined in with great enthusiasm and were incredibly supportive of each other.”
“Another part of my role is the Hive drop in sessions and the Hive Hangouts. I enjoy doing the planning for these events, coming up with activities which will keep young people engaged and also just chatting to them. I remember well how good it was to talk to people my own age who understood my situation. I’m particularly pleased now that we have started opening these sessions up to 11 and 12 year olds who are too young to join Hive itself. It’s a great way of introducing them to their peers in a completely safe way and enabling them to start supporting each other.
“Other common issues we’re facing are concerns about new diagnoses, and mental health of children and parents. I’ve also been supporting new families affected by the recent hepatitis outbreak. Even those parents who have family or friends around them find it helpful to speak to someone who understands what they are going through, who can be impartial and just let them let off steam”.
“I’ve been working on Breakaway for months and it was great to see that whole project come together,” she says. “I remember taking part in that event myself as a teenager and it was so rewarding to be on the other side, seeing the young people so relaxed and talking to each other so openly about their liver conditions.
“I’ve been doing a lot of work supporting returning children to school after long absences,” says Kate. “The support may be directly related to their liver disease but increasingly we’re looking at a more holistic approach to helping with their anxiety around returning to school after long or multiple absences. Concerns can include worries about falling behind, issues with their peers or simply finding it hard to be away from the security of home after such a long spell. I offer constructive support to parents in liaising with their child’s school, from the perspective of understanding the impact of liver conditions.
I’ve Come Full Circle
“I feel my background gives me a unique perspective in this role with CLDF and I’m so pleased to be staying on to help support young people now Louise is back. I feel I’ve come full circle. Me and my family have benefitted so much from CLDF over the years and it is great to be giving that support back.”
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While our Young People’s Officer, Louise, was on maternity leave over the past year, we were delighted to welcome Katie to the Support team as an intern. Katie, 25, knows more than most about what young people with a liver condition need. Born with Alagilles, she and her family have been receiving information and support from CLDF her whole life. She graduated last year with a BA in Youth and Community Work with Practical Theology and has been able to bring her own experience to the role, together with the theory she has learned.
Remember our support team are here for you. Contact us at (youngyoungpeople@childliverdisease.orgpeopleaged11–24)or (parentsfamilies@childliverdisease.organdallotherfamilymembers) or simply call us on 0121 212 6023. liverlife
Education a Prime Concern Children and Families Officer, Kate Conroy, provides one to one support to parents and has found that education has been a particular theme over the past year.
“I found it really interesting to see how complex the process is for getting a drug approved, especially in the case of one for a rare disease,” says Claire .”It taught me a lot and opened my eyes. It was also really empowering to feel I might have had a role in helping other families like ours. I think that if Eleanor hadn’t gone through transplant and I felt this drug might have still been an option for her, I would have felt even more passionate about getting it approved. It would have given me something very empowering and positive to channel my negative energy and anxiety into. I would love to have had this opportunity when Eleanor was little.
This involved gaining approval from NICE (the National Institute for Health and Care Excellence) a process in which we were able to play an active part thanks to those parents of children who have PFIC, who took on the role of patient expert.
The role of the patient expert is to participate in the discussions and answer the NICE Appraisal Committee's questions, relating to their experience of the therapies under appraisal and the condition that they treat.
HOW YOU CAN HELP MAKE THINGS HAPPEN
What is a patient expert?
“I find the process of drug licensing fairly interesting and having been through those early years with two children diagnosed with PFIC-2, the idea of helping the children and parents of the future was appealing,” says Rachel.
They are required to provide a personal statement about the impact of the condition and give an insight into the lived experience and impact of the condition – on all aspects of life - not just physical issues. They also receive the briefing documents which include the evidence from all the stakeholders in preparation for the meeting and attend the appraisal meeting which can be a long session.
“One of the things that I remember when Eleanor was first diagnosed was desperately wanting a miracle drug to cure her or, at least something that might have helped with the horrible side effects of her type of liver disease,” adds Claire. “I have always felt passionately about the need for research and alternative treatments for Eleanor’s condition.
“It is a time commitment,” admits Rachel. “The meetings were long and there is a lot of paperwork to complete but the support from NICE staff was exceptional and getting a positive result was wonderful.” Rachel and her son, Milo
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The patient expert can be involved in any subsequent appeals process and obviously has to abide by strict confidentiality agreements. So it represents a real commitment, but one which both Rachel and Claire were happy to take on.
"The thought of a transplant as our only option hung over me throughout her childhood and was hugely difficult for us as a family. There was very little out there in terms of research into alternatives. After everything we have been through, this felt like a way to channel my feelings and experiences into something really positive.”
One of the most exciting projects CLDF has been involved with over the past two years is helping to make the new drug Odevixibat (Bylvay) available on the NHS as a possible treatment for the rare liver disease, progressive familiar intrahepatic cholestasis (PFIC).
“I also learned not to be disappointed if the drug gets rejected at the initial consultation. This is not unusual and NICE support staff prepared us for that. If they hadn’t, I think I would have felt very sad and let down. Many drugs get accepted once an appeal is made and all the initial issues raised refusing the drug’s approval have then been addressed second time around.”
“Even though the patient rep role is tiny, every little helps in getting drug approval over the line,” says Rachel.
“The aim of the Registry is to provide accurate national data on how successful treatment is over the short, medium and longer term, together with information on other factors which may influence the outcome such as your ethnicity or where you come from,” explains Professor Mark Davenport of Kings College Hospital. “So by simply being on the database, families are playing their part in helping us to learn more about this condition.”
Rachel and Claire agree that parents who are offered the opportunity to be a patient advocate in a drug approval process should seize it.
“And don’t be intimidated, “adds Claire. “You are there to represent the patients – no one expects you to be an expert on the technical stuff. Don’t underestimate what a huge impact your small contribution can make!”
Information is stored until the child concerned reaches their 16th birthday but individuals’ names and addresses are not recorded. Where is the data stored?
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An
Once a diagnosis of biliary atresia (in England or Wales) is made, the data on the date and area of birth, type of atresia and the date and type of initial surgery is logged on the registry. Information is also collected on parental ethnicity and the presence of any other congenital abnormalities (a heart abnormality for example) . The outcome after surgery is also noted (I.e. whether jaundice has been cleared or not) and also whether a liver transplant has taken place.
Playing your part in understanding biliary atresia
The Secretary of State for Health and Social Care, following advice from the Confidentiality Advisory Group (CAG), has provided support for the Biliary Atresia Registry to process confidential patient information without consent under Regulation 5 of the Health Service (Control of Patient Information) Regulations 2002 (section 251 support) and that the data storage is compliant with EU General Data Protection Regulation 2018 (GDPR).
How does it work?
Opt Out Although we at CLDF strongly believe that collection of clinical data and knowledge of all children with biliary atresia is important, parents have the legal right to withdraw their child from the Registry by writing to the address below.
“Huge thanks are due to both Rachel and Claire and to all those who helped us appeal NICE’s original decision not to recommend the drug for the treatment of PFIC. This drug will transform lives. We now know that CLDF is to get the opportunity to play a similar role with treatments for other liver conditions and it is so exciting for parents to know they can play such a valuable role in the future treatment of their child.”
With rare conditions such as childhood liver disease, information in relation to existing cases contributes greatly to our understanding. The National Biliary Atresia Registry is a big part of this. It was set up in 1999 when the Department of Health for England and Wales concentrated medical and surgical resources for infants with suspected biliary atresia into three English centres – Leeds Children’s Hospital, Birmingham Children’s Hospital and King’s College Hospital in London.
Alison Taylor, CLDF’s former CEO who co-ordinated the process, feels that the Bylvay result shows what can be achieved by working together.
If you have any comments or questions about the Biliary Atresia Registry, please contact Prof Mark Davenport, Dept of Paediatric Surgery, Kings College Hospital, London SE5 9RS. Email mark.davenport@nhs.net. Tel: 0203 299 3350. explanation of the symptoms and diagnosis of Biliary Atresia
Biliary Atresia A Guide liverlife
All data is collected from the three national centres where surgery takes place and stored electronically in a separate secure server in King’s College Hospital.
Official recognition
MilliewithBBC’sMatt Baker on the rickshaw. liverlife Last November we at CLDF were incredibly proud to see another of our amazing young people selected to take part in the Rickshaw Challenge for BBC Children in Need. This time it was Millie who was chosen to take part in the event, which is not only a gruelling physical challenge, but requires participants to be at home in front of the camera too. Here’s what she thought of it all.
The whole selection process for the Rickshaw Challenge was actually really fun. I did a couple of phone interviews to begin with, and had to make a video introducing myself. I was then invited down to the BBC studios for a selection day along with other candidates. Here we did some fun activities including having a test ride on the rickshaw, met Matt Baker and the rest of the brilliant team. Everyone else had such inspiring and touching stories that I really wasn’t sure whether I would get selected so I was so happy in the end that I did! I couldn’t tell anyone else, though, until the team was announced on The One Show which was really Thehard!challenge itself is definitely tough. I hoped my general running and volleyball fitness would help me and I think it did. But a rickshaw is actually very different to a normal bike and it was also a very hilly route into Edinburgh! I was a bit worried that being small because of my Alagille syndrome, I might struggle to reach the pedals. But the team were able to adjust the rickshaw to fit me. Also on the day I had great support from the team around me and seeing people coming out to support along the route really spurred me on. The yummy chocolate brownies from the catering van also helped keep me going!
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I'VE LEARNT I CAN MAKE A DIFFERENCE we didn’t get to see each other as much as we would have liked. But we all got on really well. I first met Tom, Rainbow, Olivia and Harrison at the selection day, we were constantly in touch, messaging and supporting each other and it was really nice that they came to Edinburgh on the final day so we could finish all together. They are all amazing and really inspiring people! This experience has definitely taught me about the challenges other young people face and the great work other charities are doing and why fundraising is so important. On a personal level, I learnt that I can succeed in taking on a big challenge like this and make a difference to the lives of other people. It’s definitely given me even more confidence as I’ve gone back to complete my second year of university.
The publicity side of things was very weird. Television and radio interviews were not something I was used to. But again I had great support from the media team and everyone I spoke to was very nice and patient with me. I saw it as a great opportunity to promote Children in Need, and to make people aware of the great work CLDF do. Altogether I did radio interviews, the documentary filming, Morning Live filming and One Show interviews. I really enjoyed seeing how the whole process works. Because of Covid, last year’s challenge was done slightly differently with each participant having their own day, so
that
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Impact2021 Report
unknown; many are life-threatening and all require a
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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
of medical care. Children’s Liver Disease Foundation exists solely to support the needs of
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and adults diagnosed in childhood achieve
There a huge number of different liver diseases which affect babies, children and young people. causes are largely lifetime UK families vision is a world in which young adults and children are not limited by their liver disease; childhood liver diseases treated effectively, babies, children, young people, their families their
will be understood, prevented and
CLDF has an important role in contributing to and encouraging a vibrant research environment. It does this through the provision of funds and the work of the newly established Research Hub project. Although the 2021 grant round was cancelled due to the ongoing challenges of the pandemic, during 2021 we received promising updates on three CLDF funded research projects into child liver diseases:
During the year CLDF has played a key role in facilitating patient involvement in a range of research projects which seek to improve the quality of life for children with liver conditions, including Biliary Atresia, Progressive Familial Intrahepatic Cholestasis and Liver Cancer.
1 2of liver organoids for treatment of alpha-1 antitrypsin deficiency for the development of biomarkers and novel therapeutics in autoimmune hepatitis type 2 3of biomarkers in paediatric fatty liver disease
Education and information
Genome editing T cell epitopes Identification Research of providing a heart brighterfuture for children with liver disease. atliesthe CLDF has continued to provide guidance, explanations, ongoing updates and blogs on how COVID 19 a ects our families, children and young people. We worked closely with the three specialist NHS units, NHS Commissioners and Royal College of Paediatrics and Child Health (RCPCH). All hospitals caring for children with liver disease used our work to inform patients.
COVID 19 THANK
Meeting post pandemic challenges
The Covid-19 pandemic has had a significant impact on CLDF. The charity was heavily reliant on fundraised income from events, sponsored activity and community fundraising, all of which were significantly affected by social distancing and the financial climate. The team rapidly adapted to new modes of working in order to diversify fundraising and offer services digitally. Second and third waves meant that this trend continued into 2021, creating uncertainty and challenging conditions, both for fundraising and service delivery. In July 2020 CLDF reviewed and reworked its strategic plans and made the difficult decision to restructure, making six redundancies. The remaining team worked hard to maintain a consistent level of service delivery and to stabilise income, leaving the organisation in a relatively stronger position by the end of 2021 than 2020.
SUBMISSIONSBOX APPROVED The charity made an organisational submission to the NICE consultation process for a new treatment for Progressive Familial Intrahepatic Cholestasis (PFIC). CLDF also facilitated and supported the parents of children with PFIC to contribute to this process, including making submissions to the appeals process following NICE’s original decision not to recommend the drug. This resulted in the approval of the treatment in early 2022.
THANKNHSYOUYOUNHS The Project RESEARCHRESEARCHHUBHUB liverlife10
Medical support information SupportYellow Alert In 2021 CLDF provided: In 2021 CLDF distributed 19,523 Yellow Alert resources, including: 6090StorybooksTransplant 1736 720963916,394 AlertYellowleaflets 796 Yellow Alert packs 688 AlertYellow to individuals and hospitals distributed including stool charts 1,635 AlertYellowmaterials downloaded from our website posted to individuals and professionals app downloads medical, nutrition and support leaflets to 2984hospitals 2759 127 A guide to the nutrition of babies and children with liver disease Nutrition A Guide Anexplanationofwhatautoimmuneliver diseasesareincludingautoimmunehepatitis andautoimmunesclerosischolangitis Autoimmune LiverDisease Guide hard copy medical, nutrition and support leaflets to individuals medical, nutrition and support leaflets PDF downloads from the website accessed our support over 2021 on three main themes: for young people for families on Zoom individual interactions with young people (11 – 24) individual interactions with parents in 2021 Our Children and Families O cer issued these which helped keep parents connected when they couldn’t meet us face to face young people briefingsfamily familiesnew Support Centres Fortnightly catch-ups Regular Hive hangouts emotional, advocacy& practical visiting remained on hold for 2021 but 1 to 1 supportHospitalremains and Clinic digital alternative to Breakaway which focused on mental wellbeing and resilience joined in Bounceback liverlife 11
andEducationAwareness supportEmotionalandactivitiesResearchFundraisingandpublicityTotal: £493,130 Incoming resources Resources expended £246,100£179,080£18,796£49,154 liverlife12
Fundraising
Voice Representing the needs of families, children and young adults has become an increasing role for CLDF over the past decade. Highlights in 2021 included: National Screening Committee Submission In collaboration with specialist centres, we proposed that Yellow Alert stool charts be utilised in the personal child health record to support screening for Biliary Atresia. As a result the committee decided to expand the scope of their evidence map to include questions on the accuracy of stool colour cards to identify biliary atresia and whether their use improves time to surgery. The output from this exercise will inform the next UK NSC decision on whether the evidence is sufficient to commission a further review. Sharing patient views on an international stage CLDF collected views from 100 patients and carers about their experiences of care via virtual consultations during the pandemic. The results were shared by the CEO at an international virtual meeting hosted by Birmingham Children’s Hospital. The data was also used at the 2021 Annual CQUINN Audit meeting of NHS commissioners.
Funding CLDF’s work
CLDF works across all traditional fundraising income streams and benefits hugely from funds raised by the families we support. While 2021 was a better year than 2020, fundraising was still very much affected by the public health situation and there was not a return to pre-pandemic levels of income. This challenge was exacerbated by the reduction in fundraising staffing. In 2021 we received £35,522 in personal donations. This level of personal donations was significantly higher than pre-pandemic levels, reflective of our responsive and committed supporters who rallied to support the charity through the pandemic. We are very thankful to each and every person who donated to the charity in 2021.
VoRestricted£454,117VoUnrestrictedluntaryIncome£5,361£570,818Total:£111,340InvestmentIncomeluntaryIncome
Research by the UK government early into the pandemic revealed that returning to education was key to resilience in children and young people, but for those with liver conditions, this was delayed. Many have told us that this was one of the hardest parts of the pandemic – it was easier when everyone was isolating and home-schooling, but when their friends could return to school (and hang out together afterwards), they felt very left out and upset. The easing of the restrictions also caused anxiety for some – when the government said it was okay to return to ‘life as normal’, many parents felt anxious to do so, leading to tension and arguments at home. Two years on from the pandemic, it is absolutely normal to still feel anxious about COVID-19, even if everyone around you is telling you “it’s over now”. Whilst it is probably true that we are going to have to learn to live with this virus, it is okay if some of the activities you used to enjoy don’t feel so fun anymore.
It is important to look after yourself and your family. Keeping a routine is so important. Simple things like getting up and going to bed at the same time each day, and eating well, can make a huge difference, especially if you’re still working from home. It can be helpful to have particular rooms (or ‘zones’ within particular rooms) for working and resting, and make sure you stick to a proper work schedule. Social contact remains important. Try to find ways of staying in touch with friends and family, even if you are still not comfortable with large groups. Videocalls and telephone calls, whilst absolutely not a replacement for face-to-face contact are certainly better than no contact. If you are keen to get back to real life socialising but feel anxious about it, then take it step-by-step; perhaps meeting a couple of friends for a picnic initially, then build up to the level you are comfortable with. Avoid alcohol, smoking and other kinds of drugs. They can sometimes help you feel better in the moment, but usually much worse in the long run. Exercise is important and can really help our mood and mental health too. It does not need to be anything super strenuous or a big change –taking a short walk instead of driving, using the stairs or finding a fun online class will all help. If you have tried the above and still feel stuck, then it can be helpful to ask your doctors and nurses at your next appointment for advice. They may be able to offer some reassurance, and link you in with psychology support. You can also contact CLDF’s support team who may be able to signpost you to the appropriate resource. Remember, help is available so do not struggle on alone.
Dr Jemma Day, clinical psychologist at the Young Adult Liver Service at Kings, looks at the effects of the pandemic on young people with chronic health conditions.
IMPACT OF COVID
Why it may not feel like it’s over lockdowns and shielding protocols put an immense strain on my ability to interact with people. The danger of COVID to as young person was completely overwhelming... I became paranoid, standoffish and generally miserable... It has taken a lot of time and effort to readjust to the what exactly means for
Official restrictions may have been lifted but the repercussions of the pandemic are not necessarily over. Even prior to the pandemic, difficulties with emotional wellbeing and mental health were at an all-time high in young people, and there’s some evidence that these difficulties are higher still in young people with chronic health conditions. It is not hard to see why. Suddenly they could not go to school or college, or see their friends Many worried about catching the virus, or loved ones becoming unwell. In the early days of the virus, there was not much information available and we didn’t know then that children with liver conditions were not necessarily any more vulnerable to COVID-19 than their peers. Many young people and their parents told us that it was very frightening to receive a letter from the government, informing them of the need to shield. Although sometimes people talked about “everyone being in the same boat” during the pandemic, this really wasn’t the case.
“COVID
‘new normal’ post COVID and
me.” - Young patient from Kings liverlife 13
myself,
that
an immunocompromised
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WELL?Weddingbells
for Matt and Amy
DIDN'T THEY DO
Like many toddlers who have spent a lot of time in hospital, followed by lockdown at home, two year old James, who received a transplant when he was eight months old ,was very attached to his mum and, although his parents thought a couple of days a week at nursery would benefit them all, they weren’t too sure how he would take to it. But James has surprised everyone. “He’s absolutely loving it, which is amazing,” says his dad Daniel. Go James! Jawad keeps smiling through a tough year
“He’s been through so much but we’re really proud of him for his positive attitude,” says mum, Safina. “He’s looking forward to resuming his BTEC in Health and Social Care as soon as he is able. I know that many young people worry about moving into adult services but let me reassure them, the adult ward at Leeds has been like a second family toliverJawad!”life
Congratulations to Matt and Amy who finally tied the knot last summer, the wedding having been postponed three times due to lockdown. Matt, who has biliary atresia, underwent a Kasai procedure an amazing 31 years ago and although he knows he may need a transplant one day, remains fit and well and active. We wish you both many years of happiness.
Brave James is off to nursery
Twenty year old Jawad had a very tough start to 2022. In January, as doctors were trying to determine the cause of a mystery skin condition, he was admitted to his local A& E with severe jaundice. He became so poorly he was too weak to eat and had to be TPN fed; he caught Covid and then pneumonia and remained in hospital until April. After a brief spell at home, Jawad had to be readmitted with jaundice and abnormal liver function and is now awaiting a liver transplant.
James, who is 14 years post-transplant this summer, is a dedicated train enthusiast.
Twenty two year old Bradley, who was born with biliary atresia, has had a very busy year. Having qualified as an engineering geologist last summer, he started his first job with a geo tech company straight away. Since then he and his girlfriend, Charlotte, have bought, renovated and moved into a little cottage in their home county of Devon where they have now been joined by rescue cat, Athena. Bradley, we applaud your energy – best wishes for your new home!
When 21 year old Luke needed to make a film as part of his BA Hons degree in Media Production, he chose a subject close to his heart, the impact of child liver transplant on families. The moving film contributed to Luke gaining a First in his degree and he then took a well-earned break travelling around Europe. Congratulations Luke – we look forward to sharing the film on our website later this year.
James eyes up a future in animation
Prescription charges are a real concern for many of our young people.
Full steam ahead for James
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James who was born with both biliary atresia and congenital heart disease, has always enjoyed animation so he particularly liked attending CLDF’s Talk Tell Transform workshop when he was 17, where he enjoyed making new friends as well as the film-making process. Now 23, he has graduated from the University of Salford with a BA Honours degree in Animation. James hopes to pursue a career in animation for a film company and also wants to do freelance work, making people’s ideas and stories come to life. In the interim he is continuing at Nando’s, where he started during his studies, both in the kitchen and as a supervisor. We’ll be looking out for your name on the big screen in the future James!
A non-stop year for Bradley
Mackenzie scoops award
Luke's film-making debut
Well done to Mackenzie , who has auto-immune liver disease, for receiving the Dean’s Award for Outstanding Academic Achievement at Derby University. Mackenzie’s degree is in Youth Work and Community Development and she has supported CLDF at Breakaway and Talk Tell Transform as part of her practical experience, so we’re delighted to see her receive this accolade. Best of luck in your future career Mackenzie.pplaud your energy – best wishes for your new home! liverlife
Since he was 11, he has volunteered at Pugneys Light Railway in Wakefield. “He is there whatever the weather and loves every minute”, says mum, Rachel. “Now he is 16 he can take passengers out independently. He spent an entire weekend doing specialist training and even made it onto the local news! We’re very proud of him achieving this - it’s what he has worked towards for the last five years. “
Sophie celebrated her 10th birthday in June and to celebrate this milestone birthday and Sophie’s continuing good health, her Aunty Sue had her hair styled into a bright yellow mohican, raising £695 in the process. What an amazing result in every sense – we think you look fabulous Aunty Sue! liverlife
Working wonders with wood
Happy couple raise over £1000 on wedding day
AgriculturalFUNDRAISERSFANTASTICauctiontops£10k
When Katie and Nick got married they requested CLDF donations in lieu of wedding gifts as they had found the information provided so helpful when their daughter Iris was diagnosed with A1AD. They raised a fantastic £1055.
In February, Tara, assisted by husband Keith, children Tommy and Mia, and the wonderful farming community in Northern Ireland and beyond, held an agricultural auction and raised an amazing £24,500! CLDF received £10,000 and the remainder went to RVH Liver Support group and buying toys for the Blossom Unit at Craigavon Hospital. We think this is the first time we have benefitted from such an auction – what a fantastic result – thank you all!
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Thank you so much both for thinking of us on your big day and best wishes for the future.
A brave new look for Aunty Sue
When James saw a market stall of handmade wooden items, he wondered if he could revive the woodwork skills he’d last used at school. “We had some old wooden pallets lying around at home so I started building bird boxes and a few flower planters,” he said. James put them outside his house for sale, they quickly sold and he had to do more. Now he has a regular display outside his home and is also making products to order. The result is £1300 raised to date for CLDF. We’re delighted you’ve rediscovered your talent James!
Jodie takes to the skies to mark transplant anniversary
Crafted crowns a right royal success Barbara and her friends from the craft group at her assisted living complex in Ilkley started knitting red white and blue bunting to decorate their foyer and lounge for the Platinum Jubilee. When that was done, Barbara found a pattern for making crowns. Despite the fact that it was a lot more work than bunting, her enthusiastic colleagues needed little encouragement and were soon making them, filling them with chocolate oranges and selling them in their foyer to raise funds for CLDF. The jubilee crowns have raised £140 and now Barbara is encouraging her ukulele group to fundraise too. Go Barbara!
Alice takes on the Three Peaks Challenge
Claire makes marathon debut When Claire’s son, Ben - pictured here with brothers Alfie (left) and Sam - was diagnosed with PSC and autoimmune liver disease last year, she wanted to do something positive to help him. So even though she admits to not being a ‘natural runner’ she decided to take on the Edinburgh Marathon and, in doing so, raised an amazing £1800 for CLDF. “I had such a great time,” she says. “The scenery was beautiful, the spectators were fabulous and I couldn't have been happier to finish!”
Jodie had always wanted to do a skydive and decided that the 20th anniversary of her liver transplant was the perfect opportunity. She raised a fantastic £824 for CLDF and found it an amazing experience. “It was definitely more scary when I was in the plane but I just stopped overthinking it and had a fab time!” she says. “I could not recommend it more - I would do it again in a heartbeat!”liverlife
It’s a daunting challenge but she was delighted to complete it and to raise a fantastic £1470. Alice hopes her challenge will inspire other young people with A1AD and has more fundraising planned for the future.
Alice, who has A1AD, undertook the Three Peaks Challenge (climbing Snowdon, Scafell Pike and Ben Nevis in one weekend) to raise money for charity.
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After two years of being pretty much confined to the virtual world, we’re finding that real-life fundraising is certainly making a comeback in 2022. “Personal challenges such as running or hiking are proving very popular,” says CLDF’s Fundraising and Supporter Care Officer, Mica Howard. “It seems that now restrictions are over, people are very keen to get out there and if it means being around other people, so much the better!” And it seems that once people get the confidence to start fundraising again, they are met with a positive response.
CLDF is reliant on voluntary donations to continue making a difference to young people with liver disease. If you think you can help us by raising funds, we have plenty of ideas and materials to assist you. Go to childliverdisease.org/support-us/fundraise-for-us or email fundraising@childliverdisease.org.
“The only way we could have improved on the night was to have an even bigger venue as we were full to capacity with a waiting list!” Fabienne who raised £1417 with a Big Yellow Friday bingo night.
“They were all so proud of themselves for making it to the top.” Emma who raised £1500 by getting 17 children, 20 adults and a dog to climb Pen-y-ghent. “My sponsorship is still on the up which is tremendous and we feel really touched that everyone has given so generously.” Claire after running her first marathon. liverlife18
RETURN TO REAL LIFE FUNDRAISING
Your CLDF needs you!
“CLDF’s supporters are doing really well” adds Mica. “ I can’t think of one fundraiser who hasn’t surpassed their original fundraising goal” And while we salute all those amazing people who take on huge personal challenges to raise funds, not all fundraising has to be that way. “After not seeing so many people for a couple of years due to the pandemic, running a fundraiser, such as a coffee morning or picnic in the park, can be a great excuse to get friends and family together for a catch up whilst raising vital funds for CLDF,” continues Mica. “ Some of the most simple fundraisers can be the most successful and if you’re doing something you enjoy, you’ll find it much easier to raise funds as a result.”
“Our staff have come up with the ideas and it’s been nice to have a range of different activities so there is something for everyone. The fundraising for CLDF has brought fabulous comradery to the team which is a huge added benefit. It’s a great feeling for all to be raising money for such an important cause and even better when you become closer with your colleagues in the process.”
The directors’carwashwashardwork! Memory IN LOVING liverlife 19 Noah Jude Dixey 25th October 2012 –29th October 2021 Adam Flett 12th February 1992 –25th February 2013 Millie Carter 2nd April 2008 –2nd February 2022
The 100-strong team at RVA have embraced the fundraising challenge with a wide range of activities. “We started things off with Big Yellow Friday when staff organised a cake sale, pin the tail on Pikachu and Splosh the Boss, which involved a lot of custard throwing!” says RVA’s Marketing Director, John Ward. “We also had a Directors’ car wash where we cleaned 15 cars inside and out over the course of the day – my back has still not recovered - as well as smaller fund raisers like guess the weight of Ant’s new-born baby (congratulations Ant!), a Grand National sweepstake, and Wear your Football Kit to Work Day. We’re now planning footgolf in August, a Snowdon climb in September and we have nine daredevils who are jumping out of a plane in October!”
Fundraising ideas are certainly coming thick and fast at RVA Surveyors in Manchester. At the beginning of this year the company pledged to raise £10,000 for CLDF. Managing Director, Anthony Hughes, explains why: “CLDF may not be the most widely known of charities, but it is one close to my heart, the work they undertake is incredibly important to those who need them. In late 2015 we were those people, my new-born son Oscar was diagnosed with biliary atresia at just four weeks old. As you can imagine it was a harrowing time from his first major operation at just seven weeks old (which unfortunately failed), through to a lifesaving liver transplant at seven months old and learning how to live as a transplant recipient. The support of CLDF to my family remained throughout and is still ever present to this day.”
It’s brought fabulous comradery to the team
Keeping our records up to date enables us to make the 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 info@childliverdisease.org.
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It’s on every runner’s bucket list - the iconic London Marathon takes place on April 23rd 2023 and we’ll be assembling a team of superheroes who’ll be running to raise funds for CLDF. Could it be you?
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Is 2023 your year for the challenge?
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If you’re a regular runner who is confident they can complete the course and raise a minimum of £2,000 for CLDF we’d like to hear from you. To register your interest Email fundraising@childiverdisease.org or call us on 0121 212 6027.
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