LiverLife

Issue 05/2018

Contents

Cover: Left to right: Imogen, Michael, Harry and Sam had great fun at CLDF’s family weekend in Shropshire in October.

Welcome to the 2018 edition of Liver Life 06 Didn’t they do well?

As you will see in this issue, the last 12 months have been incredibly busy. We have launched new events, introduced new literature, forged a special relationship with the Welsh Government and welcomed new people on board!

We are now busy planning for our conference which you will see more about on page 5. It’s always a wonderful opportunity for the whole CLDF team to meet lots of our families so we hope that as many of you as possible are able to join us. We are also making plans for next year’s Chefs’ Gala Dinner which is at a prestigious new venue (page 36).

As ever, in addition to all the new projects, we have been running a full events programme and have so enjoyed meeting families and young people at family days, CLDF weekends, residential trips for young people and clinics around the country. Remember we are always here for you and love hearing from you.

Sadly this year we have had to say goodbye to two people who have played a key role in making CLDF the charity it is today. We were sad to learn earlier in the year that John Clements, a stalwart trustee and chair of the charity, had died after a short illness. More recently we were devastated to learn of the untimely death of David Tildesley, a trustee who supported the board and charity in many ways with tremendous enthusiasm, wit and passion. Some of you may have met David at our national conference or events. The charity has a debt of gratitude to both these wonderful men and we send all of our love to their families.

As ever, in addition to all the new projects we have been running a full events programme and have so enjoyed meeting families and young people at family days, CLDF weekends, residential trips for young people and clinics around the country. Remember we are always here for you and love hearing from you.

We hope you enjoy this issue of Liver Life and if you have any comments or feedback please do tell us. Maybe there is a subject you would like to see featured in a future issue?

If so please let us know.

13 Meet the new fundraising team

A new face for young people

04

Book your conference place

05

Didn’t they do well?

06

New partnership with Welsh Governement

08

Joe’s story helps other children

09

Big Yellow Friday

10

Research matters

12

Meet the new fundraising team

13

Come and join us!

14

Weekender to return

15

CLDF on the national and international stage

16

Impact Report 2017

17

Healthy Eating

21

22 Mum’s the word

30 Fantastic Fundraisers

Mum’s the word

22

How Global’s Make Some Noise will make a difference

24

My liver disease didn’t stop me

25

How BMX triggered my liver disease discovery

26

New guides for young people

28

Why Sarah has the last word

29

Fantastic Fundraisers

30

Why sisters are doing it for themselves

32

T-shirt gets a makeover

34

New venue for Gala Dinner

35

35 New venue for Gala Dinner

Alison Taylor Chief Executive ceo@childliverdisease.org 2

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A new face for young people

Book now for your conference place

We’re delighted to welcome Louise Carroll to our support team as Young People’s Digital & Engagement Officer.

Louise is now our point of contact for all young people aged 11 – 24, at clinic, on the telephone and across our social media pages. She’s also responsible for the residential projects we provide for young people.

It’s a busy role but Louise is undaunted as she has plenty of experience in this field.

“Prior to joining CLDF, I was working with young people who were homeless,” says Louise. “My role was to support them, to help them get back into employment, education or training, but as you can imagine there were complex cases who needed a lot of support first before they were ready to take this step. I have also worked with young offenders and I have, and continue to, help young people with learning and physical disabilities, by providing youth sessions for them to help increase their independence.”

Louise is here to support our young people.

Plans are well under way for the National Conference and Family Weekend which this year will take place on October 6 and 7 in beautiful Stratford-upon-Avon in the heart of leafy Warwickshire. We’ll be at the Crowne Plaza hotel in the centre of historic Stratford which is perfect for those of you who decide to stay over and make a weekend of it.

Full details of the programme will be on our website as soon as finalised so keep an eye out.

I want all our young people to know that I am here from them and I’m very keen to know how we can help them. Get in touch and tell me your thoughts. What would you like to see from CLDF?

As ever, the conference will be a wonderful opportunity for you to hear from many of the UK’s childhood liver disease specialists and to meet and share experiences with other families affected by childhood liver disease.

Amongst the topics you can learn more about on the day are:

• The latest developments in paediatric liver As Liver Life went to press, Louise had already met some of our young people at clinics.

“So far, I have been to Birmingham Children’s Hospital, the transition clinics at Queen Elizabeth hospital in Birmingham, and St James in Leeds and I also attended the family picnic. I have really enjoyed meeting our young people face to face and cannot wait to get online and start engaging with them on CLDF’s social media sites.

“I am really looking forward to going on the residential trips with the young people. I have been doing the planning for Breakaway and can’t wait to get everyone together and have lots of fun in our bushcraft challenge.

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“I want all our young people to know that I am here from them and I’m very keen to know how we can help them.

Get in touch and tell me your thoughts. What would you like to see from CLDF?”

care and a look at what is on the horizon

• The impact of research on treatment • Procedural anxiety – managing children’s fears • Family life with liver disease

You can contact Louise at: Tel: 0121 212 6024 Email: ypo@childliverdisease.org Web: childliverdisease.org/young-people/hive

You’ll find full details of how to book and answers to questions you may have at:

The conference will have something for everyone. Whilst adults are catching up on the latest news, children and young people over eight years old will be whisked away to Drayton Manor for a day of fun. We will also have a crèche for children under eight years old. Babies and children are not allowed into any of the conference sessions so that delegates can listen without distraction.

And following the success of the 2016 event, we will again be offering an option for a family dinner on Saturday evening and an opportunity to stay overnight, so that everyone can make the most of meeting new families and friends.

Chief Executive, Alison Taylor, commented: “The conference is a wonderful opportunity for families to meet the experts, each other and the CLDF team. It’s the one event when we are all present and we are so looking forward to seeing as many families as possible at what promises to be a great event.”

childliverdisease.org/events/nationalconference 5

Credit: Rosie Derricourt

Didn’t they do well?

Sophie’s work is published Congratulations to Sophie, who has contributed a chapter to the Palgrave Handbook of Disabled Children’s Childhood Studies. Sophie, who now works at the University of Western England in Bristol, based the chapter on her own experience of growing up with a childhood liver disease and going through transplant. Sharing your experience will really help other young people Sophie, well done!

Amelia goes for Silver Award Fifteen-year-old Amelia has autoimmune liver disease.

“On Easter Saturday I took part in a 25km walk around Windsor in preparation for my Duke of Edinburgh Silver Award Expedition. This picture is me at the end of day three. It was tough but I’m glad I did it. Hopefully next year, I will complete my DofE Gold Award.”

Harry’s swim Seven-year-old Harry has taken part in a holiday swim academy and got his first badge. He is so proud and now all ready for the Transplant Games!

Curtis’ royal encounter It’s been a busy few months for five-year-old Curtis who received his liver transplant in January.

In February he was invited to attend the official opening of the new HQ for the Welsh Air Ambulance. The air ambulance is special to Curtis as it was they who took him to King’s for his liver transplant and brought him home again.

Prince Charles was performing the opening and Curtis was asked to present him with a few jars of his favourite honey.

“Charles was very nice and interested in Curtis’ story,” says his mum Nikki. “He asked Curtis how he was feeling now after the transplant and Curtis told him about his ride in the helicopter.”

In May, Curtis received a Child of Courage award in the West Wales Community Awards. He was nominated by the air ambulance crew who flew him to King’s for being such a fighter and doing so with a smile on his face. Well done, Curtis!

Street dance success Thirteen-year-old Matt scooped several awards at the BDO Steet Dance Championships in May “He came third with his crew and when competing with his friend in duos, and his sister who also dances and has scoliosis came second with her crew. We are super proud parents,” says mum Alison.

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Roisin’s back in training We are delighted to hear that Roisin, 17, is back in training with her cheerleading team.

She says: “This time last year I sat at the front of a cheerleading competition floor supporting my team as they performed. My heart was bursting with pride as I watched them hit skill after skill but I was also heart- broken as I wasn’t on the mat competing with them as it is what I love to do.

For two full seasons I had to put my passion to one side as I underwent a transplant. However, I am now training again with my team and getting back into my ‘normal’ life of stunting, tumbling and jumping. As we embark on our biggest competition of the season, I am so thankful that I am now able to complete alongside my second family and do what I love to do.”

Matilda’s on the march Four-year-old Matilda Nixon was delighted to take part in her first sports day at kindergarten last summer.

Matilda, who has biliary atresia and received a living donor transplant just after her first birthday, won the running and throwing race and came second in jumping.

“She has always been a fast runner and was excited and confident about taking part,” says mum Ruth. “Transplant Games here we come!”

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Joe’s story helps other children We were very excited this year to publish Joe’s Liver Transplant Story, specially written for children who are facing a liver transplant. The book was written by Saskie Dorman whose son underwent a transplant two years ago.

“When Joe was listed for transplant we wanted to prepare him as best as we could, to explain how a new liver would help him, and what was going to happen. This was important to me as a mum, and also in my work as a doctor,” explains Saskie. “However, although we found some lovely books about going into hospital, neither I nor any of the CLDF team could find anything specific about having a transplant. And, although we did what we could, I still felt that Joe didn’t really understand why the operation was happening.

CLDF’s family day in Wales was the first project to be funded under the new initiative

New partnership with Welsh Government We are delighted to announce a partnership with the Welsh Government which will improve services for children with liver disease in Wales. The two-year Welsh project will encompass three main areas: Educating health professionals in spotting the signs of liver disease in babies Approximately 40% of childhood liver disease occurs in newborn babies but because liver disease is rare, the signs can easily be missed. Our whole systems approach means we will be able to provide training for every health visitor and midwife to ensure that they are all aware of how to spot the signs of liver disease in the babies who they care for.

Resources will also be provided for all GPs. Supporting families, children and young people who are affected by childhood liver disease Childhood liver disease can be isolating, both for the young people concerned and their parents. By meeting CLDF support staff when they attend a clinic with their child, Welsh families will be given access to a range of services which will change their experience of living with childhood liver disease, including our events programme.

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Moving to adult services For many young people, one of the hardest aspects of child liver disease is the transition to adulthood, both in terms of fitting in with their peers and moving from paediatric to adult services for their care. CLDF will tackle this issue by running an educational event for all adult hepatologists in Wales and also by signposting young people in Wales to the many projects which we run.

Alison Taylor commented: “We are very excited about this project. By working directly with the Welsh Government, we will be able to directly target all the health professionals concerned and make a real impact. We were delighted when Quentin Sandifer, Executive Director of Public Health Services Wales, and Andrew Yeoman, National Clinical lead for Liver Services Wales, were able to join us at our special family day at Cardiff City Football Stadium, which the partnership had funded, to see for themselves exactly how we bring families together.”

Naomi. “She was only 15 months old when she had her transplant so doesn’t remember it happening, but she says ‘this is my story’ and has been reading it to her little brother every night! I would certainly recommend it to other parents in our situation.”

“Joe had some complications after surgery which meant we were in hospital for a month. I wrote the story on my phone in those weeks, in the evenings after Joe had gone to sleep, watching him as drips replaced the fluids he was losing.”

“When CLDF’s families officer came to visit us in hospital I mentioned that I was writing the book we hadn’t been able to find! They loved the idea and said they would try and make it happen.”

We were delighted to be able to make the book happen and are truly grateful to the nurses, play therapists, surgeons, doctors and psychologists who reviewed it to ensure accuracy, as well as the other parents who provided feedback.

The book is now being used by staff at the three specialist centres. “It is a great tool when preparing children for a liver transplant,” says Lisa Beaumont, Therapeutic and Specialised Play Manager at Leeds Children’s hosptial. “All children are individuals and this book can be used for a variety of ages. It has great illustrations which help explain the transplant journey.”

It is also proving a useful resource for siblings: ”My seven- year-old son Louie identified with the book straight away,” said mum Emma. “He knew that this was what had happened to our family.”

Children who underwent transplant when they were too young to understand are finding it particularly helpful: “My daughter Kayleigh loves it”, says mum

Saskie is pictured with her son, Joe.

When CLDF’s families officer came to visit us in hospital I mentioned that I was writing the book we hadn’t been able to find! They loved the idea and said they would try and make it happen.

If you have any questions about Joe’s Liver Transplant Story please contact families@childliverdisease.org

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The stunning stage lighting was provided by local company, The Word is Love.

Left to right: comedians Danny Pensive, Ryan Gleeson and Craig Deeley, Julie, Keith and Neil Hughes of the Cinnamon Club.

Stand up for children with liver disease

so Ryan Gleeson stepped in, coming all the way from Blackpool, and was awesome,” said Julie. “And one of our acts, Tudor Owen, insisted on performing even though he had to return to Wales that night!

Julie and Keith Algie, who are parents to six-year-old Blair, first put on a Big Yellow Friday Comedy Night five years ago. It was a huge success and became an annual event.

After a break in 2017, the event at Bowdon’s fabulous Cinnamon Club was back this year by popular demand!

From chicks to comedy

“We had got a great line up of comedians, and fantastic support from friends and local businesses who had been very generous with raffle and auction prizes,” says Julie.

How you battled through the snow this Big Yellow Friday

So when the Beast from the East arrived the night before the event, neither Julie, nor Buzz Comedy, were going to let it stop them.

As you know, this year’s Big Yellow Friday coincided with heavy snow throughout the UK. Many events had to be cancelled or postponed as schools and workplaces were closed and people were advised not to travel. Despite this, due to the amazing dedication of our supporters, we still managed to raise a fantastic £64,055. We are so grateful to everyone who joined in – it certainly wasn’t easy this year!

Here are reports of two very different but highly successful events which did go ahead on the day.

“Our original compère, Nina Gilligan, was snowed in

“We were completely overwhelmed by everyone who came out in dreadful conditions to support us. Parents at Blair’s school came out in force while other families whose children have liver disease made it across from Bolton, Darlington and Hull.”

The evening was a huge success, raising £8,421.

CLDF Chief Executive, Alison Taylor, commented: “This is a tremendous result and means that the Big Yellow Comedy Night has now raised over £42,000 for CLDF. We are so grateful to Julie and Keith.”

A big thank you to everyone who sent us in their Big Yellow Friday pictures. You certainly make fundraising look fun!

Kody’s chicks bring in the cash Eight-year-old Kody from County Antrim decided to raffle knitted yellow chicks, each of which was hiding a crème egg!

They were raffled at Kody’s school, Round Tower IPS and a cafè in Carrickfergus called Ollie’s Bistro, which is owned by his Nanny and Granda, Kody’s mum Megan explains: “A lovely lady, Julie, who is a member of the PTA at Kody’s school, came up with the chick idea.”

“They were mainly knitted by family and friends, but we had lots of donations from the public including hundreds of creme eggs! Kody loved being the reason for the fundraising and making everyone aware he has liver disease.”

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“Fundraising at both venues went smoothly and we were delighted to raise £650. In fact people here were so enthusiastic about Big Yellow Friday that we were told that it was very hard to find any yellow wool in our town!”

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Research Matters CLDF is committed to funding quality research which will improve the treatment of young people with liver disease.

We are very excited to include news on this issue from a study which is currently underway at Manchester University and, as you read this, we shall be in the process of allocating up to £50,000 to new projects. We also look forward to joining forces with BSPGHAN (British Society of Paediatric, Gastroenterology, Hepatology and Nutrition) later in the year for another joint funding round.

For the latest research news go to childliverdisease.org/research

As I now approach my final year I have planned to process these samples to generate the protein data that will feed into the model.

In order to achieve this and create a robust model that is representative of the population, I have broken the project down into different stages. To start, I conducted a literature review to establish what was known about this field already and use it as a basis for my work. Since then I have spent time in the laboratory optimising the methodology to extract, analyse and quantify proteins relevant to drug transport and metabolism. This work has produced very promising results and is currently under review for publication in a scientific journal. I have also been working with surgeons, research groups and ethical boards in the UK and Europe to acquire diseased paediatric liver samples.

As I now approach my final year I have planned to process

these samples to generate the protein data that will feed into the model. This will be input in conjunction with the other patient data (body weight, blood flow, etc.) that I will collate from literature searches. Once this model is complete I aim to optimise drug dosing regimens for specific treatments in select virtual patients that I have created, comparing the results with what is already known about this drug in similar patients to help validate and improve the model. Finally, I will report these findings through a final thesis, which I hope to publish in a series of papers by the end of 2019 to inform the wider scientific community.

This is a very exciting project that has the potential to greatly improve patient care and treatment in the near future and I am grateful to be a part of it.

Meet the new fundraising team (Back Left to Right) Dr Brahim Achour, Martyn Howard, Prof. Amin Rostami, Dr Narciso Couto, Dr Zubida Al-Majdoub (Front Left to right) Dr Jill Barber, Sarah Alrubia, Areti Maria Vasilogianni, Eman Elkhateeb

Optimising drug dosing regimens in paediatric liver disease Martyn Howard from the University of Manchester explains why his current project has implications for treatment of children in the future.

Providing effective treatment for each patient is a complex process that starts from the drug development stage.

Drugs undergo many rigorous tests before they can be marketed and used in a clinical setting. However, because of ethical concerns, rarity of disease and/or the costs involved, clinical trials mainly focus on the ‘average’ person. This means that high-risk patient populations, such as children with liver disease, rely on scaled down doses based on clinician experience or local guidance, which can reduce the effectiveness and safety of the treatment. The more recent shift towards providing ‘personalised medicine’, has seen an increasing need for developing new tools to better understand how the body processes drugs in different populations.

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As a PhD student funded by Children’s Liver Disease Foundation, I am specifically interested in developing computer-based models of liver disease in children, using ‘real-world’ data generated from human samples and studies, to simulate and tailor drug dosing regimens in these individuals. This type of model is particularly interesting as it takes into account many factors that affect how the body transports and breaks down different drugs, such as types and amounts of proteins, body weight, organ weight and blood flow. All of these can be measured in patients and can provide us with a better estimate of how the drug will react within the body when compared to using animal models or scaling down from adult models.

Those of you who have been fundraising for CLDF over a few years may have realised that it’s been all change for our fundraising team over the past few months!

We now have a three-strong team ready to support your fundraising efforts in every way they can.

They are: Claire – community fundraiser Claire supports and advises on all community events from bake sales to head shaves. She is also responsible for CLDF’s challenge events, supporting those who raise sponsorship by running, cycling or skydiving.

Sophie – head of fundraising Sophie looks after all fundraising for CLDF and also has the specific job of raising funds through corporate partnerships.

Lucy – fundraising administrator Lucy is your first point of contact when you call the fundraising team.

She sends out all your fundraising materials and manages our fundraising campaigns.

If you are thinking about fundraising for CLDF, the team would love to help you. Contact them on 0121 212 6022 or fundraising@childliverdisease.org

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Come and join us!

CLDF events form a key element of our support programme and many of our families tell us that they are a way of making valuable connections.

Following the success of our weekends in Scotland and Northern Ireland, in October we held our first Central England weekend.

Fourteen families joined us for a weekend of outdoor adventure in the Shropshire countryside. As well as taking part in archery and zooming down the zip wire, there was the chance to chat with other families around the campfire and join in a scavenger hunt.

Amongst those attending was Zoe and her 11-year-old daughter, Cherry, who travelled down from Leeds. Both liked the idea of making it a weekend rather than a day.

“We hadn’t done anything like this before,” said Zoe. “We left Cherry’s three younger brothers at home with their dad and had some quality time to ourselves which was really nice. I enjoyed the activities – they were things which you wouldn’t normally get to do – but most of all I liked meeting up with other families who live with liver disease.”

“Of course no-one is going to be in an identical situation because every child is different. Cherry has interstitial lung disease and with this she has good and bad days. However liver disease is for life. We all know that and that’s why it’s so helpful to be around other people and find out how they manage things.”

Cherry and her mum Zoe enjoyed some quality time together at the Central England family weekend

Cherry also liked being around other children in a similar situation to her. “Everyone was just so relaxed about it,” she said. “People understood that all the children there had a liver condition and it just didn’t matter. The best bit was the archery. I hadn’t done that before and it was really fun.

Being away from my brothers for the weekend was very relaxing too – I would definitely do it again!”

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Weekender to return

The first CLDF’ Weekender was a big success and will return this summer.

Archery was one of the most popular activities

Of course no-one is going to be in an identical situation because every child is different. Cherry has interstitial lung disease and with this she has good and bad days. However liver disease is for life. We all know that and that’s why it’s so helpful to be around other people and find out how they manage things.

Another first in 2017 was the CLDF Weekender.

Thirty one young people (aged 16 – 24) travelled from across the UK to Derby University to take part in the event, which included workshops on living independently, emotional wellbeing and employment rights, as well as the opportunity to relax and socialise. They were even joined by Justin Grace, British Cycling’s Head Sprint Coach, who received a life-saving liver transplant himself in 2016.

The weekender was a huge success, both with those who had never taken part in anything like this before and those who were keen to catch up with old friends.

“I have never met anyone with a liver condition after living with one for years,” said Jasmine.

“Now I have friends who can relate to the same thing as me.”

And Katie added: “I had the chance to just have fun as well as share with understanding people, who have been in my position.”

The Weekender will return to Derby University this summer from August 10 – 12.

To find out more go to childliverdisease.org/events/cldfweekender

We are looking forward to seeing as many families as possible at the national conference (see page 5) and our final event of 2018 will be the York Family Day on November 17.

Keep an eye on our events page though (childliverdisease.org/events) as we are already looking at next year’s calendar!

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Professor Richard Thompson, giving the keynote hepatology address at ESPGHAN.

CLDF on the national and international stage Chief Executive, Alison Taylor, shares her experiences from two major conferences she has attended this year.

In January I went to BSPGHAN ,the annual conference of the British Society of Paediatric, Gastroenterology, Hepatology and Nutrition in Leeds.

sessions hearing about the latest developments in cuttingedge research which provides such hope for future developments in treatments and care.

We had a CLDF stand at the event and it was great to catch up with so many consultants and other healthcare professionals whom we know, as well as to meet others who are new to this field. It is also interesting to see the number of gastroenterologists who are increasingly working with children with liver disease.

Finally, we were delighted to share some of our new resources such as the updated medical leaflets, our Inspirational Young People’s guide and of course the Transplant Story book, which were all really well received.

I was honoured to be asked to present at this year’s conference; it was a fantastic opportunity to shine a light on the latest findings in relation to the continued late referral of babies with liver disease to specialist centres. Over the last five years 20% of children diagnosed with biliary atresia have been referred too late. Yellow Alert is a key area of our work and it was good to be able to talk to health care professionals about how we can work together to try to reduce the number of cases of liver disease in newborns which are still not picked up in time.

BSPGHAN was a great opportunity for me to attend some of the working groups I sit on in which we look at ways we can develop new standards of care and services for children with liver disease. It was also useful to attend

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2017 impact report

Together we make a real difference Children’s Liver Disease Foundation exists solely to support the needs of all those affected by a childhood liver disease.

There are over 100 different diseases which can affect babies, children and young people. The causes of these diseases are largely unknown; many are life-threatening; all require a lifetime of care.

We work hand in hand with our families, young people, supporters and clinical professional partners to provide our services, we are indebted to them all.

Our work is focussed in four streams: information, support, research and voice. Each is critical to help ensure that each baby, child, and young person reaches their full potential and that each family knows they have somewhere to turn.

In May I attended ESPGHAN in Geneva. As you might guess, ESPGHAN is the European version of BSPGHAN and is a huge event, attracting delegates not only from Europe but all over the world.

We were particularly proud to see our own medical director, Professor Richard Thompson, give the keynote hepatology address.

This is the third year running we have taken a stand at ESPGHAN and each time we are amazed by the response we get to all our resources. We truly are the only organisation in the world who does what we do and however much literature we bring, it is never enough.

Seeing how health professionals from around the world regard our work makes me realise we can be truly proud of what we do.

2017 was another year of new innovations and ongoing challenges.

Our dedicated supporters and staff team have made this possible in the midst of continuing financial pressure . We know that what we do makes a real difference to our families and young people and we will continue to push forward more determined than ever before to reach all of the families affected in the coming years. We can’t do this on our own but know that with the help of our supporters, partners and the health care professionals we work alongside our goal is achieveable.

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Support Highlights

Funding CLDF’s work

Children’s Liver Disease Foundation’s support service is there for everyone affected by a childhood liver disease whenever they need it.

Incoming Resources Unrestricted Voluntary Income

£739,867

Restricted Voluntary Income

£159,701

Investment Income

£13,723

Total

£913,291

CLDF’s support team attended 98 clinics across the country connecting with 686 families and young people.

688 young people between 11 and 24 had contact / support with CLDF during the year.

The support team also had 2009 contacts with parents, friends and relatives.

Resources Expended Education and awareness

£254,641

Emotional support and activities

£290,929

Research

£100,690

Fundraising and publicity

£202,122

Total

£848,382

Signed on behalf of the Board of Trustees: This summary is taken from our financial statements. To request a copy of our full audited accounts, please contact the charity.

Thomas M Ross OBE Chairman

Information Highlights

Knowledge is power – armed with accurate information, families and young people can make informed decisions.

CLDF leaflets distributed including downloads Number of visits to our websites Number of pieces of media coverage Spreading the word to medical professionals is an essential element of our work. During the year we had a presence at ten conferences including: • C PHVA - Community Practitioners and Health Visitors Association • B SPGHAN-British Society of Paediatric Gastroenterology, Hepatology and Nutrition In addition to our ongoing work we published Joe’s Liver Transplant Story to help children to understand what a liver

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CLDF held three family weekends – in Scotland, Northern Ireland and Central England, as well as Wild Camp for patients aged 7 to 11 and a parent. Special residential events for young people were Breakaway for 12 – 15 year olds and Talk Tell Transform for 16 – 18 year olds.

My daughter thoroughly enjoyed the event and was very well looked after, she has been transformed by the experience.

Words cannot describe how much. She has come back with newly gained skills, made a lot of friends and has a new confidence. - Parent

The charity ran the inaugural CLDF Weekender in 2017. The weekend conference for 16-24 year olds held in partnership with Derby University was attended by 31 young people and received exceptional feedback.

The event exceeded all my expectations. I have met some amazingly lovely people, had a chance to just have fun as well as share with others who understand, who have been in my position. The seminars and workshops were really helpful and enjoyable. - Feedback from one of the participants

Research

16,219

decrease on same period in previous year

211,762

similar to the same period in previous year

Research projects funded by CLDF not only enhance understanding, improve treatment and quality of life, but also give young people and their families hope for a better future. CLDF currently has 13 research projects ongoing.

10% increase on same period in previous year

Highlights:

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transplant is and to learn about the processes involved.

“The storybook is wonderful. It’s clear and concise and relevant to both younger (with their parents help) and older children. It will help children waiting for a transplant immensely. Sometimes it’s so hard to talk to your child when you’re trying to hide your own upset, so it will be very helpful to have something that the child and parents can read together. Thank you so much for making it happen” Feedback from one of the first recipients.

Projects Awarded 2017: Genome editing liver organoids for treatment of liver disease Dr Deborah Gill – Oxford University Identification of biomarkers in paediatric fatty liver disease Dr Jake Mann - Department of Paediatrics, Addenbrooke’s Hospital Diagnosis of covert hepatic encephalopathy in young people with biliary atresia: a feasibility study Dr Marianne Samyn – Kings College Hospital

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Voice Highlights Children’s Liver Disease Foundation gives thousands of young people and their families one strong voice to effect change in the diagnosis and treatment of childhood liver disease.

This year CLDF’s Chief Executive Alison Taylor has consulted with and represented patients and families on a range of projects which include: NICE guidelines and NHS strategies and working with the Welsh government on their Liver Strategy

Co chairing The Liver Patients Transplant Consortium and working with NHSBT on arrangements for the new liver offering system Being the lead paediatric patient advocate on the European Reference Network for Rare Liver disease

Yellow Alert is CLDF’s campaign to promote the early diagnosis and appropriate referral for liver disease in newly born infants.

Early diagnosis saves lives.

The number of Yellow Alert resources distributed this year, including download and apps:

9,898

Visits to Yellow Alert Website:

20,950

Healthy Eating A simple guide to eating well

By Laura Johnson - Senior Specialist Paediatric Dietitian (Hrepatology and Intestinal Failure) - Birmingham Children’s Hospital There are so many conflicting messages given by the media about the foods we should or shouldn’t be eating that it can be a minefield trying to decide what we feed our families, especially when one or more children has a liver condition. With rising levels of obesity and non-alcoholic fatty liver disease (NAFLD) being seen in children new initiatives have been launched to try and tackle this and support families to make healthy choices.

• Don’t worry about naturally occurring sugar in dairy products and fruit.

My aim is to summarise some practical suggestions to help ensure all members of the family are eating a healthy balanced diet to promote normal growth and development.

• Reduce processed foods such as pizza and pastry

Aim for five portions of fruit, vegetables or salad a day • for children a portion is roughly the amount that will fit in the palm of their hand

Fundraising Highlights Our sincere thanks goes to all those individuals and organisations who so kindly supported Children’s Liver Disease Foundation in 2017.

Thousands of people give generously to us throughout the year, these donations are critical and make our work possible.

44 charitable trusts kindly supported us providing £100,800 to support key projects.

• One small glass (150mls) of pure fruit juice can be counted towards this total • Fresh, frozen or tinned fruit and vegetables can be used uitable snacks- up to 100 calories. In healthy children S we recommend a maximum of two snacks a day. Where children have been advised, because of their liver condition, to take on a higher calorie diet, you would not need to restrict this.

• A slice of malt loaf

Our biennial Chefs Gala Dinner 2017 raised £130,475 Our work with corporate partners has increased, many coming through links with families. These relationships are invaluable to us. During the year we secured a partnership with Global’s Make Some Noise that will fund a variety of support events over the coming two years.

• Low fat/low sugar fromage frais • Fresh or tinned fruit salad

• Choose No Added Sugar drinks and limit fruit juice and smoothies to 150mls a day.

Tips to reduce saturated fat • Choose low fat options for butter, margarine and cheese • Limit snacks containing saturated fats such as chocolates, biscuits, cakes and pastries

Increased activity • Kids need to be active for 60 minutes a day. If this seems daunting take a look at the Change For Life website for ideas to increase your families activity levels The above advice is suitable for the vast majority of children but, because there are so many different liver conditions, there are cases, particularly with advanced liver disease, where we may advise differently. If you have particular concerns about your child please ask to see your dietitian.

My aim is to summarise some practical suggestions to help ensure all members of the family are eating a healthy balanced diet to promote normal growth and development.

• Chopped carrot/cucumber with low fat hummous • Rice cakes or crackers with low fat cheese • Sugar free jelly

The work that CLDF do is amazing, at my lowest point I found the charity who helped me more than you would imagine. Always people to talk to, they hold events where all the children can get together and enjoy themselves. I can’t thank them enough. That’s why I’m asking you all please support us in raising money to help CLDF keep growing and helping families like my own.

Laura a parent and supporter

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• One crumpet • One scotch pancake Children are having on average nearly three times more sugar than they should and half of it is coming from sugary drinks and unhealthy snacks. There are some simple ways of reducing children’s sugar intake: On behalf of all our inspirational young people and their families, a sincere thank you to everyone, we couldn’t do it without you.

• Change snacks from cakes, biscuits and chocolate to those listed above.

Laura advises parents to consult their dietitian with concerns.

For more information head to nhs.uk/change4life or gov.uk/government/publications/the-eatwell-guide

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Mum’s the word

Motherhood is great – the hardest job I’ve ever done, but my son is a joy – clever, funny and healthy. My pregnancy was pretty plain sailing but I had to be induced at 36 weeks because of some liver complications - essentially many of the same ‘levels’ that would increase in the case of rejection also increase in the case of something called obstetric cholestasis, which is what I had. Following the birth I had a biopsy just to be sure all was well and then was discharged.

Pregnancy and childbirth can be challenging enough so the added complication of a liver disease is an understandable concern. Here three mums who have a liver condition share their experiences.

Emma, who is 33, has biliary atresia and had a liver transplant when she was 7. She is mum to two-and-ahalf-year-old William and is expecting her second child in September.

Motherhood is great – the hardest job I’ve ever done, but my son is a joy – clever, funny and healthy.

I always wanted children but knew it wouldn’t be as straightforward as I had hoped. I was about five months pregnant with Matilda when I had a very bad bleed, due to varices, and was rushed into the LITU at King’s. I was in hospital for three weeks before being discharged as long as I promised to stay at home and not do anything for the remaining four months of my pregnancy. This was the hardest thing I have ever had to do!

I remember that sometimes when my husband Mark came home from work we would go down to the Co-Op near our apartment. That was my trip out! I had endoscopies every few weeks to ensure that there were no more varices and Matilda was born at 41 weeks by elective caesarean, very healthy and happy.

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Although I wanted Matilda to have a sibling I was worried that history would repeat itself but the second time around, regular endoscopies and taking it easy as much as I could led to a much smoother time. Louis, another healthy happy baby, was born by elective caesarean at 39 weeks.

Because I worried so much while I was pregnant I felt like having a newborn was far less stressful than the actual pregnancies themselves! I will forever feel blessed to have been able to experience something that I had wished and hoped for all my life.

During the time between pregnancies, my obstetrician, Dr Penna, has started a clinic for women with liver conditions going through pregnancy, a very positive sign for women planning pregnancies for the future.

We’re delighted to be expecting another little boy although I must admit this pregnancy is harder work with a toddler running around! It also means we have had to insist on shared care in Nottingham. We dropped everything and went to London to have William, but we can’t simply do that this time. The team at QMC are great however and are liaising with King’s. It looks like obstetric cholestatis is inevitable as the recurrence rate is about 80%. But it’s a small price to pay – I feel very lucky!

At my 20 week scan they spotted a nodule on Evie’s lung so I had more frequent checks but luckily she is absolutely fine. Being a mum is very hard work but also the most rewarding work ever. I think my liver condition affects me in that I do sometimes get really tired, particularly if I have a cold, but I have a great support network with her grandparents, and Evie goes to nursery three days a week which is great for her and does give me a little bit of time.

Georgina is pictured with her husband Mark and her children, Matilda and Louis.

Georgina, who is 36, has biliary atresia.

She is mum to four-year-old Matilda and one-yearold Louis.

My son had some jaundice when he was born, so of course I panicked, but he was fine after a couple of days under UV light. I think I have gone through the same motherhood challenges as everyone else. I was advised not to breastfeed because of the immunosuppression medication I take but bottle feeding has suited us all fine. I have also had a few adjustments to my medicines before and after the birth and did notice some slight side effects where they have increased.

Evie has brought such joy to our lives. We thought that I may not even be able to have babies, because medication would have to be stopped, causing nine months of liver damage, but obviously I can and I’m so happy about that!

Amy with her daughter Evie

Amy, who is 23, has autoimmune liver disease. Three years ago, she gave birth to baby Evie.

My pregnancy was quite straightforward. My consultant, Dr Jane Collier at the John Radcliffe in Oxford, wanted to see me more often than usual to keep an eye on everything but luckily everything went smoothly. They decided not to stop my medication but to lower the dose.

Evie has brought such joy to our lives

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My liver disease didn’t stop me from…

How Global’s Make Some Noise will make a difference CLDF was thrilled to be one of the charities to benefit from Global’s Make Some Noise Appeal last October. Make Some Noise is all about highlighting the work of smaller charities, like ourselves, who do not get the same level of exposure as bigger organisations.

This was not only a fantastic opportunity to secure what we hoped would be £35,000 of funding but also to publicise our work across Global’s well known radio stations including Heart FM, Classic FM, Smooth Radio, Capital FM and LBC. A huge thank you to all those families who helped us with this campaign by agreeing to tell their story and raise awareness of childhood liver disease. We could not undertake these fundraising campaigns without you.

In March this year, Alison Taylor, our CEO, was invited in to Global’s London HQ to be interviewed about how CLDF would spend the money allocated. She was joined by Daisy, one of our young people and her dad Jamie, who were going to explain what CLDF meant to them. Imagine their surprise when Heart FM presenters, Jamie Theakston and Emma

Doing a ski season in France

Jamie Theakston and Emma Bunton of Heart FM surprised Daisy, her dad Jamie and Alison from CLDF with a cheque for £80,000!

‘Baby Spice’ Bunton burst into the room with a giant cheque for £80,000, more than double what we were expecting!

Alison said: “This was a wonderful surprise which has enabled us to plan a number of events with real confidence. It is a fantastic feeling to know that we can now reach even more young people and families than we had hoped.”

Daisy added: “I had never been anywhere quite like it. We went in to the studio and although I was nervous about talking, the staff at Global made me feel really special and at complete ease. We were so surprised after we had said our ‘thank yous’ and Emma and Jamie came in behind us!

Dad was left speechless and in awe, as he loved the Spice Girls and got a peck on the cheek from Baby Spice!”

19-year-old Finn, who has alpha-1 antitrypsin deficiency, spent last winter working in the French ski resort of La Pagne.

“I had always wanted to do a ski season and happened to fall into a friendship group who wanted to do the same, so eight of us went out there together,” he says.

“I was working as a spa assistant and also as a chalet host. It was hard work but the lifestyle was brilliant. Being able to go out skiing whenever I want and experiencing every snow condition the resort had to offer throughout the season was amazing.

We were all crammed into a tiny apartment with people climbing over each other, playing games and having a laugh.

Finn takes a breather from his duties.

“My parents always encouraged me to be an individual. Despite my liver condition, they didn’t cocoon me and I’m grateful for that because I’ve always been a bit of a free spirit.

“Unfortunately, when I was younger that meant not taking my meds all the time. The only reason I didn’t get really ill wasn’t because I didn’t need them – it was just because I was lucky.

“Laurie had a tough start to life and received a liver transplant just before his second birthday. I will always remember how CLDF were a great help and support during a very tough time,” he explains.

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“As for what’s next, I honestly have no idea. I am working for the local ferry service back in my home town at the moment but seriously considering going back out to France for another winter season.”

Merlee, who is 20, has biliary atresia and received a liver transplant when she was two. She has lived independently since she was 17.

If you would like to support CLDF’s work and fundraising events are not your thing, a regular gift is a great way of doing so. Steve Cole started one to celebrate his godson, Laurie’s 16th birthday.

“It’s great to know that CLDF are there when he needs them.

Starting a regular gift was my way of doing something for Laurie and for other young people like him.”

“To anybody considering working abroad I would say do it. It’s a really good way to break the cycle of normal life and make new friends. I went out with a big group but don’t be afraid to go on your own.

Everyone is in the same boat and it’s very easy to make friends.

Living independently

Gift that keeps on giving

“Happily, Laurie is now doing really well. Annoyingly he is taller than me now! He loves sports, particularly football, and is a kind, funny, thoughtful and all round lovely young man.”

“I don’t think my liver condition affected my time out there hugely. I didn’t drink or go out to the bars as much as everyone else but to be honest I was there to have fun and go skiing, not lie in bed with a hangover.

“I have lived alone since I split up with my boyfriend last year and I love it. I love being independent, doing what I want, when I want. I am doing a mentoring course at college as one day I would like to give other young people the kind of support I have had. In my spare time I love creative writing and spending time with my friends and family. And I take my meds every day!

Laurie inspired Steve’s regular gift

To make a regular gift go to childliverdisease.org/supportus/donations/monthly-donations.

Merlee has always prided herself on being an individual.

“To any young person who wants to be independent I would say do it. But just look after yourself. Your family have been through trauma once – don’t make them go through it again. Being an individual is great but it’s not all about you.”

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Doing anything I want Gemma, 24, had a liver transplant as a baby.

She is now an environmental consultant for the design and engineering firm, Arup.

“My day job involves doing environmental assessments for rail and road projects,” says Gemma. “Outside work I love travelling to different parts of the country to visit friends and trying various new activities–most recently aerial acrobatics, 1920s Charleston dancing and trampolining!

“My liver history is an integral part of my identity.

It has never stopped me from pursuing the future I want but is something that makes me different and gives me an increased drive to succeed!

“If liver disease does have a restriction on my life now, it’s to do with travelling. Due to the immunosuppressants I take I am restricted from going to certain parts of the world. However, as there are so many fabulous parts of the world that I can visit this is not a large concern to me!

“To any young person who worries that their liver disease will impact on their future choices I would say remember you are an amazing and special person who has already faced something that not many people have to face and that has made you a strong and resilient person. Keep that fire going, it will set you aside from others in whatever future you pursue. And if you are worried, ask for help – that is what CLDF is there for!”

Giles does not let alpha 1 rule his family life.

How BMX triggered my liver disease discovery In Liver Life we feature many children and young adults who are coping brilliantly with their liver condition. But what happens after that? What’s it like to be a ‘proper grown up’ with a childhood liver disease? Here Giles Hider (aged almost 42) who has alpha 1 antitrypsin deficiency, gives us an insight.

When I was born in September 1976 there was no CLDF. My mum tells me that I developed quite a large pot belly during my first couple of years and when I was three, tests revealed I had an enlarged spleen.

Gemma loves travelling

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This only became an issue when I was eight years old and like every other kid in 1984, I wanted a BMX bike. This set off a warning bell with my mum who had read about BMX riders damaging their spleens when falling off their bikes.

She contacted our GP for advice, we were referred for tests and this time they confirmed that I still had an enlarged spleen, but I also had alpha-1 antitrypsin deficiency.

It was just after university that having alpha-1 caused my only real disappointment in life. I had always wanted to join the Royal Air Force but was told I wasn’t eligible, due to my condition. So I decided that if I could not join the Royal Air Force, I would work for a company that designed and built aircraft.

Alpha-1 is a genetic disorder. To have the condition, you must receive two faulty genes, one from each of your parents. Because so little was known about it in those days, I was asked to attend King’s College Hospital to participate in further tests to aid research. I even remember one of the King’s researchers coming to a family gathering to take blood samples!

After that, apart from six-monthly visits to hospital, life was not greatly different for me although due to my enlarged spleen, I was advised against taking part in contact sports.

Likewise, at university I felt no different to any other student, although on the advice of my doctor, I avoided smoking and alcohol. Whenever people asked me why, I would just explain. Because I was honest with people, I found that they respected this reason and I was never pressured into drinking.

It was just after university that having alpha-1 caused my only real disappointment in life. I had always wanted to join the Royal Air Force but was told I wasn’t eligible, due to my condition. So I decided that if I could not join the

Royal Air Force, I would work for a company that designed and built aircraft.

In 2002, I moved to Somerset to work for a helicopter manufacturer. It was here that I met my wife. We were married in 2007 (when I admit I did have a glass of champagne!). Before starting our family, we asked for my wife to be tested for alpha-1 antitrypsin deficiency.

Happily, the results revealed that both of her associated genes were normal. We now have a son and daughter and neither of them have alpha-1, although both are carriers.

I am now 41 years old, I don’t take any form of medication, but I do attend my local hospital for annual observations and tests. Maybe I will need a liver transplant one day.

We don’t know. In the meantime, I don’t allow alpha-1 antitrypsin deficiency to rule my life or my family’s.

I really hope that my story is helpful to children with this condition, and their parents. My final word to anyone with this condition is do not allow it to be an obstacle and continue to live your life to the full.

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New guides for young people

Why Sarah has the last word At CLDF we produce a huge amount of literature, from our Yellow Alert packs which help medical professionals spot the signs of liver disease, to medical information on the many different liver conditions and leaflets which offer guidance and support on living with childhood liver disease. At the last count we had over 100 different pieces of print and we want to make sure we get them all right. So we’re delighted that Sarah Henstock, who has a particular interest in our work, is now playing a key role in our literature production.

The update of our literature range is progressing well with 12 of our medical leaflets now available in the new format and the remainder in production. All of our medical information is accredited by the Information Standard, so you know that it is accurate, up to date and evidence based. In addition, we are delighted to announce two new leaflets in our Support series.

Liver Disease – A Guide for Young People, is aimed at teenagers aged 16 and over and brings together a host of information on subjects from education, work and going on holiday, to tattoos, alcohol and contraception.

Support Team Leader, Carol Hebden, explained: “Because of the rarity of childhood liver disease it’s so easy to feel that you’re alone. Our Inspirational Young People booklet shows that your experience is not unusual and the fantastic young people who contributed have some real words of wisdom to offer.

“The Guide for Young People is full of practical information and replaces a number of leaflets we previously produced on a range of topics. We hope the 16-plus age group find it useful but if there is a subject which people would like covered and it isn’t there, please tell us!”

Inspirational Young People, also for the 16-plus age group, includes stories and experiences of a range of young people who live with liver disease.

All CLDF literature is available on request or to download from our website.

In loving memory

Ethan Bennett

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11th October 2010 – 7th July 2011

Thirty-six-year-old Sarah was born with alpha-1 antitrypsin deficiency. “I was quite ill in my first 12 months or so but of course I don’t remember any of it, so it caused my parents a lot more grief than it did me,” she explains.

“There was not much awareness of childhood liver disease when I was a baby and CLDF had only been around for a year or so, but I do know that my parents were given information on the charity by the team at Kings which they found very helpful.

“I was one of the lucky ones in that I did not need a transplant and the main impact my liver condition had on me was the annual trip to London for me and my brother (who has the same condition) to have our check-ups. I also had the warning when I was in my mid-teens that I shouldn’t drink much alcohol, never smoke, and only take a certain birth control pill.”

Although Sarah admits she has always loved words, it was only when she went on maternity leave two years ago that she seriously considered becoming a professional proofreader.

Sarah Henstock Bringing her proofreading skills to CLDF

“I thought it would be a job I could initially fit in around my son’s nap times but then develop as he got older,” she explains. “I joined SfEP (Society for Editors and Proofreaders) and took a couple of their courses as well as the industry-recognised PTC (Publishing Training Centre) course: Basic Proofreading.”

“Once I was qualified, I approached CLDF as I wanted to build up experience and thought I could help a charity close to my heart at the same time. I have worked on a variety of their leaflets already and it’s really interesting to see how their services have expanded over the years.”

The team at CLDF have welcomed Sarah’s input.

“Provision of information is one of our key services and it’s vital that information is accurate,” says Chief Executive, Alison Taylor. “With her knowledge of the charity combined with professional training in this area, Sarah is perfectly placed to assist us with this and she is already making a valuable contribution!”

Christine Marie Gray 19th February 1996 – 20th September 2013

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Fantastic Fundraisers As a charity almost entirely reliant on voluntary donations, we couldn’t do what we do without our fabulous fundraisers. Here are just some of the highlights from the past 12 months.

Amazing Grace Eight-year-old Grace was so keen to show her support for six-year-old sister Eve, who was awaiting a liver transplant, that she arranged a sponsored haircut at school Grace’s lovely long hair was donated to the Little Princess Trust and she smashed her original target of £150 for CLDF. Her total currently stands at over £3,500. Truly amazing, Grace!

Why Friday 13th is lucky for Liam Many people would not choose Friday 13th to do a sky dive but 18-year-old Liam leapt at the chance – literally.

He had his liver transplant on a Friday 13th so it’s always been a lucky day for him. By getting sponsorship from his local leisure centre, Liam got all his costs covered so he raised over £1,000 for CLDF and thoroughly enjoyed his sky dive experience.

Pedal to the church on time!

As parents to four-year-old Tilly who had a liver transplant at ten months, Paul and Charlotte have always joined in with Big Yellow Friday. And when they realised that their forthcoming wedding would be the day after, they didn’t want that to stop them. So Paul persuaded his best man and two other family members to join him in a 240 mile sponsored cycle to their wedding venue. We’re happy to report that, despite dreadful weather conditions, everyone made it safely, the wedding went without a hitch and they raised a fantastic £2,750.

Around the world for Archie Matt and his partner Kirsty embarked on a round-the-world static cycle trip in September in support of Matt’s nephew Archie, who has alpha-1 antitrypsin deficiency.

“I am lucky that Kirsty was happy to support me in this challenge, because it’s a total of 24,901.55 miles which means between us we have to complete 68 miles a day every day,” says Matt. ”We have stuck to it and are hoping to have raised £1,000 by this September.”

Fuelled by enthusiasm Otis’s adventurers tackle Snowdon Jonathan and Danielle, parents to baby Otis who is awaiting a liver transplant, persuaded 30 members of their family and friends to join them on a trek up Snowdon in May. They described it as an amazing experience and were delighted that most of the party actually made it to the summit.

What’s more, they are on course to raise £5,000 - double their original target.

CLDF was lucky to be the chosen charity for two BP regions this year. In January, we were the charity of the month for petrol station stores throughout Gloucestershire and Wales. Fourteen stores hosted a range of fundraising activities for staff and customers and raised an amazing £21,000. Shortly afterwards, stores in the south east region decided to join in with Big Yellow Friday and raised £12,500 in just three days. We are so grateful to all BP staff involved for their incredible enthusiasm. They clearly had great fun whilst raising such a fantastic amount!

A marathon effort!

A huge thank you to our 20 strong team who took on the London Marathon this year. Our group, who ranged in age from 18 to 71 were a mix of first timers and true marathon veterans. Each had their own reasons for wanting to run 26.2 miles for CLDF and they really did us proud. Not only did they complete the course in record-breaking London Marathon temperatures, but between them they raised over £50,000. We are so grateful to them all.

If you are tempted by the idea of taking on a running challenge for CLDF contact fundraising@childliverdisease. org.

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We love the Domino effect When Emma’s friends and family were asking local businesses for raffle prizes for a CLDF fundraising evening, Domino’s Pizzas were happy to oblige with vouchers. In fact, they wanted to know more about CLDF. When they discovered how the charity supported Emma and her family after her daughter Ava was diagnosed with biliary atresia, they not only donated £400 but invited the family in for a fun morning of pizza making!

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Why sisters are doing it for themselves In the last issue of Liver Life, we reported on the impact that childhood liver disease can have on siblings when they are young. We have discovered, however, that as they grow up, siblings can become fantastic fundraising partners.

Overcoming obstacles Emma knew just how to surprise her sister, Lizzie, on her 21st birthday last month – an entry for both of them for the Chelmsford 5K Obstacle Run! That might not be everyone’s idea of a birthday surprise, but Lizzie was thrilled as it has enabled the sisters to raise over £1700 for CLDF.

Hayley (left) and her sister Emma who abseiled down

Abseil Challenge

“When Lizzie was born I was so pleased to be a big sister but the joy was short-lived” explains Emma, 27. “She became very poorly when she was just a few weeks old and was diagnosed with biliary atresia. She was moved to King’s College Hospital in London and had life-saving surgery at just 11 weeks old.

“I clearly remember her being christened at the chapel at Kings. She was so very poorly, there was not a big chance she would make it. This was incredibly traumatic and distressing for our whole family.

Emma (left) and her sister Lizzie raised over £1700 for CLDF doing the Chelmsford 5K Obstacle Run.

“Happily thanks to brilliant care, Lizzie recovered quickly.

She still needed a variety of medicines to keep her condition under control and over the years has endured numerous biopsies and hospital stays due to her weakened immune system. However she lives a full and happy life and I am so proud of her.

“CLDF were so supportive to my family when Lizzie was very ill that I thought raising funds for them would be a great way to mark her 21st and something we could do together.”

Emma was right – Lizzie was delighted with her birthday surprise and the Obstacle Run lived up to expectations.

“It was great fun” says Emma. “The running was hard as it was very hot and being short meant we had to do a lot of jumping to get over the obstacles. I also got really bad friction burns on my elbows but I’m proud of my war wounds!

“I certainly didn’t think I would ever be doing this with my sister as she was so poorly when she was younger. When I planned this I hoped that we might raise £300 so it really meant the world to raise so much and I’m so proud of Lizzie for what she has achieved.”

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Hayley prepares to make the drop!

Birmingham’s Hampton by Hilton Hotel in September.

Sisters Hayley and Emma were both born with alpha-1 antitrypsin deficiency. ”While Hayley was asymptomatic, I was very poorly and underwent a life-saving liver transplant when I was seven,” says Emma who is now 28. “Although I take medication I have fortunately been well since. At the time of my transplant I was too young to understand how poorly I was or how worried my parents must have been.

We decided we would love to give something back to the charity who provided our parents with information and support at what was a very difficult time for them, so when we heard about the CLDF abseil we decided it would be a fun thing to do together!”

The girls admit, however that once the day arrived, the challenge did seem more daunting!

“The abseil definitely seemed a lot scarier when we got to the building and saw how high up we were,” says Hayley.

“Emma was very anxious about going over the edge. I was slightly better but then was very scared when I was half way down and realised I had to keep going!

“Despite this, the whole experience was fun and exciting and we raised over £500 which was a lot higher than our original target.”

Expanding our fundraising volunteer network It was tough going but they were both determined!

Although CLDF supports families throughout the UK, we are only a small team and we are now on the lookout for volunteers who might be able to spare a few hours to get involved in a variety of fundraising volunteering opportunities.

I clearly remember her being christened at the chapel at King’s.

She was so very poorly, there was not a big chance she would make it. This was incredibly traumatic and distressing for our whole family.

“We are on the lookout for people who have a little bit of spare time to help out with anything from putting out collecting tins in their local town to perhaps giving a talk to a local group about the charity,” explains head of fundraising, Sophie Burt. ”Volunteering can fit in around your lifestyle and commitments. The fundraising team will be on hand to support you and provide all the kit you need to get involved and help us raise vital funds.”

To enquire about volunteer roles email volunteering@childliverdisease.org or call 0121 212 6022.

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T-shirt gets a makeover After 10 years we thought it was time the CLDF T-shirt had a fresh look, and a big thank you to all of you who entered our competition to design a new picture for the reverse. What an artistic bunch you are!

Our winning design was by ten-year-old Ruth whose picture shows her journey with her liver condition. She said, “I was so excited to win and even more so when I saw my picture on the T-shirt. I love how the colours look – they have done a really good job!”

Ruth’s design replaces the drawing done by Megan, whose sister Aimee has a liver condition.

Jumeirah Carlton Tower in London’s Knightsbridge

New venue for Gala Dinner

Megan still recalls her excitement at winning the competition: “I couldn’t believe that my design was going to be worn by thousands of people. I was so proud and Aimee was excited too.”

“A little bit of me is sad that my design is being replaced but I’m happy that someone else gets to experience the happiness and excitement that I felt back when I was eight years old.”

A little bit of me is sad that my design is being replaced but I’m happy that someone else gets to experience the happiness and excitement that I felt back when I was eight years old.

Ruth shows off the new design

We are delighted to announce that the 2019 Chef’s Gala Dinner will take place at the fivestar Jumeirah Carlton Tower in London’s Knightsbridge, on Monday March 18.

See you at the games!

Head Chef Simon Young will host the event while three of the capital’s finest chefs will prepare each of the courses.

We in the CLDF office are so excited that the Transplant Games is coming to Birmingham from August 2 – 5. With accommodation sold out months ago and bookings at a record high, it promises to be a fantastic event.

As ever, the event promises to be not only a wonderful fundraiser for CLDF but a unique evening, perfect for corporate hospitality.

We know that lots of our families are taking part and because this is our ’home games’ we are hoping to see lots of events and meet as many of you as we can. Keep an eye on our website afterwards for a report.

To find out more and reserve a table go to childliverdisease.org/chefs-gala-dinner.

Small charity - high standards Charities have been hitting the headlines for all the wrong reasons over the past year as the actions of a few large organisations have brought the whole sector into disrepute.

In a tough fundraising climate, this causes us considerable dismay and we would like to reassure all our supporters that CLDF adheres to the highest standards: • All of our staff and trustees undertake child safeguarding training on a regular basis and know the importance of safeguarding in all aspects of our work.

Megan, our previous winner, with her sister Aimee

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We’re looking forward to seeing lots of families at the Transplant Games!

Head Chef Simon Young will be hosting the Chef’s Gala Dinner at the luxurious Jumeirah Carlton Tower

• We do not work in isolation and seek the advice of medical professionals to inform our work.

• Your information is confidential. We do not, never have and would not in the future share your data with any third party, let alone sell it for a profit.

• We do not employ third parties to fundraise on our behalf, neither do we purchase/ use external databases of information about individuals for marketing purposes.

• We exist soley to meet the needs of children, young people and families affected by childhood liver disease, no matter what activity we undertake that is our focus.

If you have any questions about our standards or any aspects of our practices please contact us at info@childliverdisease.org.

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Let us know how you would like to keep in touch

You have probably heard by now about the General Data Protection Regulation (GDPR) and changes to data protection laws.

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.

By contacting you in the way you choose, we can be more cost effective in our communications and marketing activity.

For full details of our privacy policy go to childliverdisease.org/privacypolicy.

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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