Liver Life 2023

Issue 10 Summer 2023

Front cover: Alice at the London Marathon. Credit: Sportograf.

WELCOME Welcome to the 2023 edition of Liverlife.

This issue of Liverlife comes just as we have said goodbye to our Chief Executive, Rebecca Cooper, who has left us to take up a new role. Over the past 12 months, Rebecca has steered CLDF through a challenging time, offering advice to the Trustees as we have begun to develop a future strategy for the charity. We thank her for all her hard work and wish her well.

I would like to thank everyone who has supported us with fundraising over the past year. It is thanks to you that we are in a position to look to the future with confidence.

We shall, of course, keep our families up to date with all developments but if any of you do have any questions or comments for us then please do make contact at info@ childliverdisease.org

As you will see in this issue, the past year has been a very busy one as our reduced but dedicated team has been supporting families and young people through a range of issues. They have also been working to promote awareness and understanding of childhood liver disease amongst frontline health professionals, and representing the interests of our families where potential new treatments are concerned.

Best Wishes

I want to express the appreciation of the Board of Trustees for the effort made by all staff and volunteers to maintaining such high levels of commitment to everyone who looks to CLDF for information and support.

Following Rebecca’s departure, the board wishes to take time to consider carefully how to manage the way forward.

Over the next few months, myself, Vice Chair, Phil Orme and the Trustees, will be working closely with CLDF’s senior staff so that we can build a clear picture of what is needed before any new appointments are made. As always, the needs of our young people and their families will be at the heart of our decision making.

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Mairi Mairi Everard Chair of Trustees

CONTENTS 04

How Support Works In 2023

06

Didn't They Do Well

08

Working With Health Professionals

09

Impact Report 2022

13

Why I'm a Trustee

14

Fantastic Fundraisers

16

Podcast Channel Launches

17

In Loving Memory

18

Bringing Young People Together

19

Transplant Games

20

I'm Glad I Made The Squad

HOW SUPPORT WORKS IN 2023 Here for you whichever way you prefer Although we do not currently have the resources to go into hospital clinics, our team have been no less busy providing families with information and support on a range of issues.

"It’s been an incredibly busy 12 months for family support” says Head of Services, Michelle. “And whilst we’d love more opportunities for face to face contact, it’s good to see that people are getting in touch via email or the website to ask for help.

"The most common issues we have been providing support with are the understandable shock of a new diagnosis, difficulties with schools over attendance issues, financial assistance and addressing concerns with health professionals.

“It’s fair to say that mental health, particularly anxiety, is a theme which runs through most of our calls and is the reason we’ve put together our wellbeing programme (details on page 5)."

“I’ll communicate with parents in whatever way they prefer,” adds Children & Families Officer, Kate. “So it might be a Zoom call involving the school, a phone call or just an email or text back. We don’t mind – it’s about what people feel comfortable with.

"It’s been nice to see people coming back to us after months or even years of stability when a difficulty has occurred or maybe issues have arisen with a sibling. It’s important that families realise that we want to help and we’re here for the long haul, not just for those tough first few months."

Michelle

Supporting young people in 2023 The importance of digital support for our young people has grown over the past year.

"CLDF Hive and Hive+ are now well established as safe social media spaces where young people can chat online with others who understand their situation," says Young People’s Officer, Louise.

"In addition, our monthly Hive Zoom sessions give them the opportunity to chat to us and each other about a range of issues and it’s important that wherever they are in the UK, young people know that they have that.

"Although children can’t join Hive until they are 13, we identified a need for more support in younger age groups, so this year, we’ve expanded our Zoom sessions so that children can join from the age of nine. It’s been great to see the younger age groups connecting and making friends. We hope that by realising from a young age that they are not alone, and have a peer support network around them, they will feel better equipped when they start senior school, which can be a daunting move."

Louise

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Because we’re now covering a wider age range, we have reviewed our sessions to make the age groups slightly narrower, enabling young people to make closer connections with others they have things in common with. We want to ensure that young people are comfortable when joining the sessions and are in a group that feels appropriate to the milestones they are facing together. Our new timetable is below: • Last Tuesday of the month | 4:15pm – 5:15pm | Ages 9 – 10 • Last Thursday of the month | 7:00pm – 8:30pm | Ages 11 – 13 (group 1) • Last Thursday of the month | 7:00pm – 8:30pm | Ages 14 – 17 (group 2) • Plus quarterly sessions for ages 18-24 – dates on website In addition to these sessions, we continue to be available for 1-2-1 calls with young people.

To arrange a call or join one of the sessions simply email youngpeople@childliverdisease.org.

Prioritising well-being "As any parent of a child with liver disease knows, your own needs always come second, however much people tell you to look after yourself" says Childrens & Families Officer Kate. "It’s for this reason that we ran our first wellbeing course for parents last September. It proved very popular, and we’ll be running more, starting this month.

"The four-week online courses are specifically focussed on the issues faced when parenting a child with a chronic condition and provide techniques to enable parents help themselves and their children to process this often difficult journey.

The courses are free to parents who are registered with CLDF, and we know that parents who did the first one found it valuable."

"This course helped normalise how I was feeling and made me feel less alone"

Kate

"I found the information on anxiety and the coping skills very helpful and I now know all the support CLDF can provide."

To register your interest for our wellbeing course email families@childliverdisease.org Remember our support team are here for you. Contact us at  youngpeople@childliverdisease.org (young people aged 11 – 24) or  families@childliverdisease.org

(parents and all other family members) or

 simply call us on 0121 212 6023.

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DIDN’T THEY DO WELL?

Albie was King for a day

After suffering sudden acute liver failure in November 2021, Albie went through a tough time, spending weeks in hospital, undergoing a transplant, missing his three older brothers and getting used to a whole new regime of medication. He coped with it all very bravely as he was determined to get better. So when his 10th birthday coincided with the King’s coronation, it only seemed right that the family hosted a special themed celebration. It’s no more than you deserve, King Albie!

Look out Lewis – there’s a new kid on the block Seven year old Harry was diagnosed with alpha1 antitrypsin deficiency last year after having to be admitted to hospital with lots of pain. Fortunately he is currently stable and, as a huge F1 fan, has been enjoying competing in bambino gokarting. “I’m delighted to report that he now has his racing licence and has won his first race,” says mum, Jennifer. “We hope he will be able to continue his love and joy for his sport for as long as possible.” So do we Harry and we look forward to many more trophies to come!

Charlie’s proud to play for England

Keen footballer, Charlie, 12, who has been playing for his local team for several years, has now become a Team Ambassador for the England Transplant FC youth team.

“I’ve been to the England training centre at St George’s Park and it was amazing to see where all my heroes have played,” he says. “Now I’m excited to see where it can take us as a team. My dream would be to travel to the different stadiums in Europe to play”. We’ll be following your progress Charlie!

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Creative Katy is one to watch

Congratulations to Katy who has just obtained a First in her BA Hons degree in Media Make Up with Special Effects for the Creative Industries. “I studied character designing, small and large scale prosthetics, straight to skin makeup effects, wig setting, dressing and hair wrapping, and stage makeup” says Katy. “I was really proud to have my final presentation displayed at college.” Great work Katy – we’ll be looking out for your name in film credits in the future!”

Ada is Yorkshire’s Choice

Eight year old Ada was named Young Achiever of the Year in the Yorkshire Choice Awards which took place in June.

Ada received the award for joining her family in tireless fundraising for CLDF - raising £85,000 to date – and inspiring other children to do so.

“There were eight other amazing kids in her category, so we really didn’t expect her to win – we were just delighted she was nominated,” says mum, Emma. “So we were super proud, particularly when she got up on stage in front of 750 people and spoke on the mic – a great shout out for CLDF!” Go Ada – there really is no stopping you!

Gemma’s research is first class

Huge congratulations to Gemma, who has been awarded a fantastic 85% - a high first – for the dissertation she submitted for her Primary Education degree. Inspired by her experience as mum to Oliver, who has PFIC, Gemma chose to do her dissertation on the impact of this condition on a child’s education. “I’m so proud of my project,” says Gemma. “CLDF helped me source subjects for my research and I’m hoping that the results will be helpful to the charity and to other parents of children with PFIC. I’m now planning to expand on this subject in my Masters degree.”

We always love to hear about and share your children’s achievements. Please email press@childliverdisease.org liverlife

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How we’re spreading the word to health professionals I’m Joanne Taylor and I joined CLDF in January 2023 as the Information and Awareness Lead. I previously worked for the NHS for many years, so this has been a big change for me, but I am so excited to be working for such a wonderful charity.

BSPGHAN

In March I attended the BSPGHAN (British Society of Paediatric Gastroenterology, Hepatology and Nutrition) annual conference. This was a wonderful opportunity to meet some of our medical professionals face to face and to display our wide range of CLDF literature. It also gave me a chance to promote our revamped Pro News bulletin.

We now send out two versions every other month – one for healthcare professionals working in the specialist centres and hospitals and a second for professionals working in community settings. The bulletins keep them up-to-date with the latest news, information and research related to childhood liver diseases and they’ve been really well received.

Yellow Alert

I’m keen to increase awareness of our Yellow Alert campaign to identify signs of liver disease in newborns (yellowalert. org) amongst healthcare professionals and families and have been building contacts and distributing resources as widely as possible. I am also introducing free Yellow Alert training for health visiting and midwifery students to make them aware of neonatal jaundice and CLDF resources as early in their careers as possible. I’ve had a great response from university tutors, many of whom have requested virtual training, so I’ve also created a video presentation that tutors can disseminate widely to their students.

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CLDF information resources

My biggest project involves updating CLDF leaflets and information resources and working to gain PIF Tick accreditation (this system will show that our information has been through a professional and robust production process). I’m currently updating our PFIC leaflet and I hope to achieve PIF Tick accreditation in the next few months. After this, I will continue working through all CLDF literature to make sure that it remains up-to-date, evidence based and easy to use. I hope that families will get involved along the way because your voices are so important to us.

I have lots of ideas for expanding and improving our information provision including research blogs, information podcasts, animations and developing resources in more accessible formats. There are so many opportunities, and I can’t wait to get stuck in!

J

I wanted to give you all an update on what I have been working on during my first few months in post and to tell you about some of the exciting plans I have for the future.

e nn a o

n ma

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2022 IMPACT REPORT

Childhood liver diseases are rare, complex and life-changing. The causes are largely unknown; many are life-threatening.

A diagnosis means 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: • I nforming and educating healthcare professionals, parents and the public about childhood liver disease and the signs and symptoms • Providing young people and their families with tailored support services • Campaigning to give all those affected one strong voice • Funding and supporting vital research into causes and possible treatments 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 all those affected achieve their full potential.

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Support in 2022 CLDF had

2,861

interactions with families, children, and young people

The team has seen a surge in demand for their services, with a 95% increase in families reaching out to CLDF compared to pre-pandemic.

120 family

calls

315

video calls

requests for CLDF

110

461 phone

literature

young people

attended ZOOM calls

983 emails

from families

2successful

650 emails

from young people

events

Wild Camp weekend

(7-11yr olds - accompanied)

Breakaway Outdoor Challenge

(12-15yr olds)

Medical & Support Information In 2022 CLDF provided:

85

Transplant Storybooks

to individuals and hospitals

2,485 3,682 401 hard copy medical, nutrition and support leaflets to individuals

medical, nutrition and support leaflets PDF downloads from the website

medical, nutrition and support leaflets to delegates at conferences

Information & awareness During 2022, requests for our medical and support resources continued to rise, with a 94,405 distribution total across all means of access.

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2,047

hard copy medical, nutrition and support leaflets to hospitals Nutrition A Guide

Autoim Diseas mune Live r e

A Guid

e

A guide to the nutrition of babies and children with liver disease

An exp diseaselanation of wh and aut s are includi at autoim mune ng oimmu liver ne scle autoimmu ne rosis cholang hepatitis itis

94,405

Yellow Alert

Our Yellow Alert resources help Primary Health Care professionals to spot the signs of liver disease in babies, enabling faster referral to specialist centres where expert care can be given, saving lives.

In 2022 CLDF distributed 24,381 Yellow Alert resources, including:

999

Yellow Alert packs

101,971

posted to hospitals and individuals, including medical professionals

Yellow Alert app downloads

21,559

1,823

copies of Yellow Alert literature

(excluding packs sent to hospitals and individuals, including medical professionals)

Yellow Alert materials downloaded from our website

During 2022, we placed particular focus on raising awareness amongst healthcare professionals in Wales and undertook a postal programme, sending 405 Yellow Alert packs to GP practices in Wales.

Research CLDF recognises it has an important role in contributing to and encouraging a vibrant research environment through the provision of grants and the CLDF research hub.

Grants Programme Due to the charity’s financial position and the delay in some projects commencing due to the challenges of COVID-19, CLDF did not accept any applications for new research grants in 2022/23. We continued to support all existing projects, reports were received, and the website was updated with the latest developments.

Research Hub The project promotes research in paediatric hepatology and enables families and young people to provide insights from lived experience to help researchers to hone research questions and project applications. In 2022 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.

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Fundraising

CLDF works across all traditional fundraising income streams and benefits hugely from funds raised by the families we support. Income generation has remained challenging for the charity since the Covid pandemic.

Investment in fundraising had declined since 2020 when the charity had scaled back its operational structure to ensure that expenditure was appropriate to reduced income levels brought about by the pandemic. The Covid-19 pandemic and subsequent cost of living crisis continue to have a significant impact on fundraising activity.

Despite 2022 being such a challenging year for fundraising, CLDF supporters continued to find innovative ways to raise money for the charity including a New Year’s Day swim, an auction, craft sales, Facebook birthday fundraising along with participation in events such as the London Marathon, and the Great North Run.

Incoming resources

Resources expended

Investment Income

Research

£5,401

Restricted Voluntary Income

£97,582

Unrestricted Voluntary Income

Emotional support and activities

Education and Awareness

£18,856

£155,573

£367,114

Total: £470,097

£242,249 Total: £416,678

Voice

During 2022 CLDF continued to represent the needs of our young people and families on a national level.

• In February 2022, NICE confirmed that the drug Odevixibat (Bylvay) would be available on the NHS as a possible treatment for progressive familial intrahepatic cholestasis (PFIC) in patients six months and older. Working with families, CLDF played a key part in the appeals process to reverse NICE’s original decision not to recommend the drug for the treatment of PFIC. • CLDF also made an organisational submission for a new diagnostic technology, LiverMultiScan in the treatment of NonAlcoholic Fatty Liver Disease (NAFLD).

• We also provided a further patient organisation submission for a treatment for Wolman Disease, as this is a rare metabolic condition which affects the liver. The decision on this will be made in 2023.

We also work with several groups and organisations, supporting campaigns, representing patients and attending working groups, meetings and conferences, in as far as our resources allow.

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We focus on the longer term

The CLDF Board of Trustees is far less visible to our families than the staff, yet their role is a vital one. Here, Stephen Gaw explains why he wanted to play a part.

I first heard about CLDF back in 2013 when my baby daughter, Lily, was diagnosed with portal hypertension and oesophageal varices. This ultimately led to her having a liver transplant in May 2014 at the age of 14 months when her mum - my wife Lianne - donated part of her liver. Shortly after her transplant, Lily developed post-transplant lymphoproliferative disease (PTLD) which resulted in a fairly long stay in Leeds General Infirmary. Throughout this difficult time, CLDF provided support in various forms, be this leaflets explaining complicated issues in clear terms, or even just having someone visit the ward for a comforting chat.

I’m grateful that Lily is now a happy, active 10 year old but we’ve never forgotten the invaluable support which CLDF provided to us over the years. I wanted to give something back which is why I joined the charity as a trustee in 2022.

I certainly feel that the Board is made up of the right blend of people, which helps to create a strong team. From myself – as the parent of a child with a liver transplant – to Chief Executives and Professors of Medical Organisations, there are a variety of thoughts, opinions and experiences which will really help push CLDF on to fulfilling the vision of the charity.

From those I speak to within the organisation, I get a strong feeling that there is a sense of pride attached to saying that they work for CLDF. I feel very grateful to be part of this organisation and will continue to do what I can to ensure the charity meets its mission and values.

The experience of being a trustee has certainly been different to what I expected – in a positive way. The amount of detail that is discussed at monthly meetings is extraordinary – the team at CLDF go above and beyond to ensure that we are all fully aware of what is going on within the charity. The charity is run in the same way as a professional organisation – the governance around the way that it is run, and the detail discussed around operational and financial aspects are as good if not better than I have seen in many businesses I have worked in.

The most challenging aspect is trying to not get too bogged down in the immediate day-to-day issues but rather try and focus on the longer term. We have a great team of people who look after the operational side of the charity, so it is our responsibility to consider where we want the charity to be in two, five or ten years’ time, and agree what we need to do now to allow that to happen. At all times we need to remember what the purpose of the charity is, and have the families’ needs and desires at the forefront of our decision-making.

Stephen, pictured here with his daughter Lily and son Luca, ran the London Marathon for CLDF this year raising over £7000.

If you are interested in becoming a CLDF trustee, register your interest by emailing info@childliverdisease.org

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FANTASTIC FUNDRAISERS

Anna faces her fears with O2 A special celebration to remember Matthew arena walk We are so proud of Anna, who put aside her fear of heights to walk across the top of London’s O2 arena, raising over £1,100 for CLDF. Anna was inspired by her baby granddaughter, Sofia, who is currently awaiting a liver transplant.

“I felt so helpless that I couldn’t do anything to fix my granddaughter or the pain and anxiety that her parents are going through,” she said. “But I knew I could help the charity who are helping them, so I decided to step out of my comfort zone and do something positive.”

Richard continues long term support with Lodge donation As Master of East Surrey Masonic Lodge, Richard chose CLDF as his charity and we were delighted to receive a cheque from them for £1,250. Richard has been a CLDF supporter of the charity for many years - ever since his son, Adam, was diagnosed with liver disease as a baby. We’re happy to report that Adam is now a well and active 42 year old with a son of his own!

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Mark and Valerie’s son Matthew sadly passed away in 2007 at the age of 33. This May, they invited family and friends to gather and, as Mark explains: “We decided to celebrate what would have been his 50th birthday and turned it into a fundraising event for our favourite charity CLDF. A pleasant day was had by all of us and we had great pleasure in sending CLDF the sum of £400.” What a wonderful tribute to Matthew which is hugely appreciated.

Salma dances her way to £4K Nursery teacher, Salma, wanted to do something special to celebrate the forthcoming 30th anniversary of her liver transplant so she decided on a six-hour danceathon in a variety of fancy dress outfits! She was joined by local musicians and performers and boosted her fundraising by selling Indian treats donated by local businesses. Salma not only provided a wonderful day’s entertainment for the people of Hitchin but raised an amazing £4,000 for CLDF. Those tired feet were well worth it Salma!

Andy conquers Kilimanjaro...

In February this year, inspired by his god-daughter who has had two liver transplants, Andy fulfilled a long held ambition to climb Mount Kilimanjaro. “It’s been on my bucket list for years so it seemed a perfect opportunity to raise funds for a cause which I am close to,” he explains. “The whole experience was very challenging in every way. However, this was more than made up for by the fact that on 16th February 2023, I was literally the first person to be on the summit of Kilimanjaro, the tallest mountain in Africa and the highest free standing mountain in the world. That, and raising over £4,200 for CLDF means that I’m very pleased and proud that I did it and truly grateful to everyone who supported me".

... while Chloe and Catherine climb Yorkshire Three Peaks Closer to home, in another climbing challenge, Chloe and Catherine took on the Yorkshire Three Peaks, inspired by Chloe’s ‘brave, strong and funny’ nephew Oliver, who has Alagille’s syndrome. This means taking on Pen-Y-Ghent (694m), Whernside (736m) and Ingleborough (723m) in under 12 hours. They did it in ten and a half hours, raised £820 for CLDF and are now on the lookout for their next crazy challenge – well done both!

Frankie’s fabulous designs top £28K The amazing Frankie is proof that fundraising doesn’t have to involve a physical challenge or big occasion. Frankie is a talented knitter who makes her patterns for blankets, bags, toys and gifts available free online and requests a donation to CLDF. Over the past 16 years her designs have raised £28,400 for CLDF. A fantastic achievement and we’re so grateful Frankie has put her talent to such wonderful use.

Thank you.

Amelia’s bracelets bring in the cash And continuing the creative theme, nine year old Amelia, who has biliary atresia, wanted to raise money to support other children with liver disease so she and her friend Sophia got busy making a wonderful variety of loom bands which they sold to make £30. What a great initiative – well done!

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CLDF Chatter gives new outlet for sharing experiences CLDF Chatter, our podcast channel, was launched in January this year. We introduced it because we know how valuable our young people find hearing the experiences of others and wanted them to be able to do so whenever it is convenient to them, rather than just in a Hive Zoom session.

So far this year we’ve broadcast 11 podcasts which have received 939 ‘listens’. We’re very grateful to the young people who have shared their stories with us and have been delighted with the response.

One of those young people is Louis who says:

Roisin agrees that providing a sense of optimism to other families is important:

“My parents were given my diagnosis of biliary atresia at Kings College Hospital in 2001. The internet was in its infancy and there was no social media. The modern capacity we have to utilise such resources enables young people and families alike to engage with a source of information about a young person’s liver journey, providing a sense of optimism.

I feel my parents would have relished the opportunity to listen to these podcasts, and that for me is why CLDF Chatter is so valuable.”

“Recording a podcast was a new experience for me, but it was one I really enjoyed. Being able to tell my rollercoaster of a journey with liver disease is something I rarely shy away from and the response my podcast received was incredible.

I hope that hearing my story helps others that are affected by liver disease and gives them, and their families, some hope and optimism in a time that can be overwhelming and uncertain.”

“CLDF Chatter has proved a fascinating experience so far,” says Young People’s Officer, Louise. “I feel privileged that so many people have shared their stories with me and following the success we’ve had with our young people’s stories we’re now planning podcasts on other topics – watch this space!”

Catch up with CLDF Chatter here

CLDF Chatter - YouTube

Representing our families in technology appraisal Over the past few months, CLDF has been involved in the NICE appraisal of MRI technology for LiverMultiScan or magnetic resonance elastography (MRE) to assess non-alcoholic fatty liver disease (NAFLD), the fastest growing liver disease in adults and children.

Although this has not yet been approved for use and a recommendation was made that more research was needed, we reported that as a children’s charity we have watched the development of these technologies with great interest and want to champion effective non-invasive diagnostics for our children. We know only too well the huge impact that biopsies have on small children and consequently their families. We highlighted the issue of risk, due to the fact that in children, biopsies take place under general anaesthetic (with additional NHS costs and family worry).

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From our perspective, any effective technology which can reduce the need for biopsy in the diagnosis and care of children will have a benefit far beyond the NHS costs involved.

We shall keep you updated on this appraisal and other opportunities in relation to new medicines and technologies, where we shall continue to be the voice of our parents and patients. It is vital that the impact of liver disease is fully understood, based on the experience of those it affects most.

THANK YOU STEVEN In February this year we said goodbye to Steven Featley, a true character and great advocate of CLDF and organ donation, who packed a huge amount into his 28 years, despite rarely enjoying full fitness.

Steven, who had biliary atresia, underwent a total of six liver transplants. It meant he spent many months in hospital and missed out on a lot of school, but he was very determined, gaining a place at university to study accountancy, and was achieving firsts in his exams before his deteriorating health meant he had to leave the course.

Steven faced his significant health challenges with humour and resilience and was always keen to improve things for other young people in his situation. He regularly fundraised for CLDF and he used his lifelong passion for Arsenal and for Formula 1 to raise awareness of children’s liver disease and the need for organ donation via his YouTube channel https://www.youtube.com/@SFeatleyTV. We were privileged to support Steven through his all too short liver journey, and we are humbled to see that his commitment to raising awareness of childhood liver disease is to be continued by his mother, Eira, his sister, Zara, and his many friends online. Steven, we thank you.

Memory I N

L O V I N G

Jonathan Carroll

Thea Harris

26th October 1981 15th April 2023

12th October 2017 11th June 2023

Steven Featley 30th October 1994 – 27th February 2023

Natalie Jane Close 25th October 1973 – 2nd September 1974

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Bringing young people together We know how valuable peer support is to young people with a liver disease, and that can work in different ways, as 18 year old Kate recently discovered.

I was born with biliary atresia and had a liver transplant when I was two. I know that my parents had contact with CLDF when I was little and I did too, but over the years I had lost contact. When I was transitioning from Birmingham Children’s Hospital to the adult liver services at the Queen Elizabeth Hospital, I was given a postcard to fill in if I’d like to benefit from CLDF’s young people’s services. I thought it might be helpful so I did, and shortly afterwards I had a call from Louise.

training - which is what I want to do - and with Mollie, who lives near me. Having people around who I can talk to has really helped me. My anxiety is still there but it’s not as severe as it was. I’m even considering moving away, rather than staying local, when I go to university so I fully benefit from the experience.

So I would advise anyone in my position to contact CLDF’s young people service and don’t just think ‘that’s not for me.’

I’m very glad I spent two minutes filling out that postcard!

She explained all the ways in which CLDF could support me.

And while I liked the idea that there were other people around who I could probably really relate to, my anxiety levels at the time were quite high. I’m also not great in groups – I’m much more comfortable in a one to one situation.

Louise said this wasn’t a problem and she put me in touch with three other young people, who all live with a liver condition. First, I was introduced to Emily who is lovely, really easy to talk to and she’s even helping me with my personal statement for my uni application. I’m also now in contact with Roisin, who’s just finished her paramedic

Marathon challenge reaps rewards One of the highlights of our year so far has been to see the London Marathon back in April with the crowds returning to cheer on the competitors. Twenty-four runners took part on behalf of CLDF and raised a fantastic total of £72,068.

Taking on the London Marathon, like any challenge event, represents a huge commitment in terms of training and fundraising so we were delighted to hear that it proved to be a truly memorable experience for those who took part.

If you’d like to take on a challenge for CLDF, whether it’s a Marathon, the Great North Run or one of the many UK and overseas challenge events, we are here to help. From suggestions on what to take on, to providing fundraising materials and tips on how you can hit that target, we’re with you all the way.

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“Incredible support from the crowd ….there wa sn’t a moment of quiet”

there is a d where ing "In a worl an amaz as this w lot of bad all good.” event of

Emily

“The supporting is cially breathtaking – espe to ng gli ug str s wa when I lf” take a breath myse

Adam

“I enjoyed every moment, even the last mile!”

Hannah

Simon

https://childliverdisease.org/support-us/fundraise-for-us/challenges/

TRANSPLANT GAMES ARE SENT TO COVENTRY The British Transplant Games took place in Coventry at the end of July. And because our office is in nearby Birmingham, it meant that the CLDF team were able to be there to cheer on many of our young people who were competing. It was wonderful both to catch up with familiar faces and to meet those children who were taking part in the Games for the first time. Congratulations to all of you who won medals but most of all thank you everyone who took part in this wonderful celebration of the gift of organ donation.

Your CLDF needs you!

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.

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I’m glad I made the squad Let us know how you would like to keep in touch

We know that the young people we support at CLDF are amazing but it’s great to know the BBC agree with us! Last autumn, Charlina became the latest young person to be selected for the One Show fundraising challenge for Children in Need. This year’s challenge was the Surprise Squad, which involved young people who had all benefited in some way from Children in Need funding working on a practical project to help others.

"It was flattering to know I was being considered for the Surprise Squad but to be honest, I didn’t think I’d be chosen," says Charlina. "At the audition weekend, which was great fun, there were loads of inspiring young people with great stories to tell and I tend to be on the quieter side. So when I got the call to say I’d been picked, I was truly shocked. I’m so glad I was though – as it proved a fantastic experience. Yes, the projects were all properly physical – but we had expert help, and the TV presenters all joined in too. It was fascinating to meet them all and see how live TV works.

You have probably heard by now about the General

"I’m pleased I got to share my story on TV including talking about bullying. I know children with health problems can Data Protection Regulation (GDPR) and changes to data be bullied at school and I feel strongly that it’s not OK, so raising awareness of that as well as CLDF meant a lot. I also protection laws. enjoyed meeting the other members of the Surprise Squad. They were all so nice and I know I’ve now made friends with people I will keep in touch with."

You have been receiving occasional communications from Children’s Liver Disease Foundation and this will continue.

However, if at any time you would like to change how you hear from us, or wish to be removed from our database, please let us know by visiting childliverdisease.org/keep-intouch. Or if you prefer just give us a call on 0121 212 3839.

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Charlina (right) with the rest of the Surprise Squad.

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36 Great Charles Street, Birmingham B3 3JY 0121 212 3839 | info@childliverdisease.org childliverdisease.org | cldf-focus.org Registered Charity Number: 1067331 (England & Wales); SC044387 (Scotland) Registered Company Number: 3431169 | ISSN 2398-3485

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