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Issue 02/Spring 2016

Cover: Aurelia (aged 4) and Maggi (CLDF’s sessional youth worker) are busy having lots of fun getting messy painting pots at CLDF’s Family Picnic. Aurelia came to the picnic with her family and baby sister Sophia who was diagnosed with biliary atresia earlier that year. This was their first family event, which they thoroughly enjoyed. Between the covers of this second edition of Liver Life you’ll find plenty of interesting features including an article on our new patron, the success of our latest Yellow Alert initiatives and the difference that corporate partnerships can make to the charity. It’s incredibly important to us that you receive our information in the best way for you and we’re now able to send Liver Life by email. If you’d prefer to receive information from us digitally please do let us know - you’ll get the same information and the charity can spend less on postage. Just drop an email to

Welcome to the spring edition of Liver Life It’s been a long winter but spring is definitely here and we’ve been celebrating over the last few weeks, applauding the amazing fundraisers who made Big Yellow Friday so successful. The support has been phenomenal and on behalf of all the trustees, staff, families, children and young people we support I want to say a heartfelt thank you. For an update on what’s been raised so far, please visit

Finally, if you haven’t already booked onto the CLDF National Conference and Family Weekend on 24th and 25th September (see below) please do. I look forward to welcoming as many of you as possible.

Alison Taylor Chief Executive

CLDF National Conference and Family Weekend 2016 CLDF is holding its biennial conference on 24th and 25th September and after listening to feedback, a new venue has been chosen to host the event, Chesford Grange in Kenilworth, near Warwick. We hope that everyone will enjoy the new venue. As well as the main conference on Saturday 24th September there is an option for those attending to join CLDF for a meal in the evening and to stay overnight. The evening will provide the opportunity to meet and chat with other families in a relaxed, informal environment.

Chesford Grange, the new venue for our 2016 conference

The event is an opportunity for families to hear from experts on a wide range of topics including advances in research, condition specific areas and the social/ psychological aspects of liver disease. While parents are enjoying the conference, children over eight will be whisked away to Drayton Manor for a day of fun and families can take advantage of an on-site crèche at the hotel for children under eight.

environment: “At whatever stage you are, there is something very special about sharing with other families and listening to the wonderful health professionals who feel so passionate about their work and who give us their time at the weekend.” Jane, parent

Previous attendees have valued the opportunity to talk to healthcare professionals outside of the hospital

For further information and to book please visit


We hope you can join us for this biennial event.

contents Andrey_Popov/

Supporting psychological care p6

Poppy as a baby p16

Vital Volunteers p17

A day in the life p21

Research news


CLDF welcomes Claire


A lasting gift/Supporting psychological care


Why there’s a buzz about Hive


Two unsung heroes


One trustee’s unique perspective


Cooking up a very special event


Moving to adult services


A question of transplant


My first weekend


The business of fundraising


How I coped with my child’s diagnosis


Be on Yellow Alert/Volunteering


Fantastic fundraisers


Getting to know our Scientific Committee


A day in the life


Mum Julie explains why she wants to make a difference


Hints and tips for ward stays


CLDF events 2016/17



CLDF events for all

Everyone had a great time at our first Family Weekend at Hampden Park in Glasgow

Over the last year, over 800 people attended CLDF events across the UK, including 80 firsttime families. From bowling days to adventure weekends, there were over 15 fun and information-packed events enabling people to get together, share experiences and make new friendships. Our weekends are proving very popular and you can hear all about the Northern Ireland event from Megan, one of our young people on page 14. Our first family weekend in Scotland, held at Hampden Park, involved a variety of speakers from Royal Hospital for Children in Glasgow, Royal Hospital for Sick Children in Edinburgh and Royal Aberdeen Children’s Hospital, who kindly gave up their Saturdays to speak to parents and carers.

Pam Rogers, one of the speakers and a clinical nurse specialist in Edinburgh, said: “It was a brilliant day. The venue was great, everyone was really interested and asked lots of questions. The feedback from families was great as well. They enjoyed meeting others and really valued the opportunity to ask questions outside the hospital environment in a less formal setting.” We’ve lots more great events for all ages planned over the next 12 months - please see the back cover for dates and locations.

For more details and to book your places visit, email families@, call 0121 212 6023, or text 07860 021602.

Research News Supporting research into childhood liver disease is central to CLDF’s work, furthering understanding, which can then lead to improved treatments and care. CLDF supports a wide range of projects ranging from clinical and laboratory research to understanding the lives of those with liver disease and how they can be supported. One of CLDF’s projects coming to a close in 2016 is the role of Vitamin D in the progression of Non Alcoholic Fatty Liver Disease (NAFLD). This project is examining the diet and specific genes that can affect vitamin D levels in UK children with NAFLD. The results of the study will inform nutrition guidelines for paediatric liver disease patients and provide molecular insight into the role of vitamin D. The final results will be published later this year. In collaboration with CORE, a charity committed to fighting all digestive diseases, CLDF is funding a project 04

which is examining how particular cells within the liver, called myofibroblasts, may play a role in biliary atresia. In biliary atresia, and other conditions involving biliary fibrosis, scarring occurs within the bile ducts. This study is looking at how this scarring may be prevented or reversed using myofibroblasts from patients with biliary atresia. Another study funded by CLDF shortly coming to a close is focussed on young people’s transition between children’s and adults’ services. The project aims to explore transition from a young person’s perspective and identify potential improvements in the process. CLDF will be offering one or more PhD student fellowships in the 2016 grant round, with a deadline for applicants of 31st May. Following peer review by CLDF’s Scientific Committee and successful selection the projects are due to begin from October 2017. To find out more about CLDF’s research projects visit

CLDF Welcomes Claire We are delighted to welcome actress, Claire Sweeney, as our new CLDF patron. Claire will be a familiar face to many of you from her extensive TV work, ranging from her role as Brookside’s Lindsey Corkhill to presenting programmes including Claire Sweeney: My Big Fat Diet, 60 Minute Makeover and Loose Women. Claire has appeared in a number of West End musicals including Chicago and Guys and Dolls and is currently touring the UK with the musical, Hairspray, in which she plays Velma von Tussle, an experience she is thoroughly enjoying. “Musical theatre is definitely my first love,” says Claire. “I love to act, sing and dance and you get to do all of that in theatre. There is a great buzz from being in front of a live audience which I never tire of. Television is not so exciting but it’s good to do TV from time to time so everyone remembers who you are! “Hairspray has been great fun. It’s a fantastic show to be in and we’ve been getting great reviews. It’s an energetic show though and we really have covered the country so it’s exhausting at the same time. I’m certainly planning a little break when the tour is over.” As if appearing in Hairspray was not energetic enough, Claire is also mum to 19-month-old Jaxon. And she admits it was being a mum which helped her identify with the CLDF cause: “I first heard about the charity’s work when I attended the Chef’s Gala Dinner in London a few years’ ago. I knew nothing about liver disease in children beforehand and it was amazing to see how much was being achieved by such a small charity. Last year I met CLDF’s chief executive Alison, who explained to me more about the work CLDF does, particularly the support they offer to families whose children have been affected. “Now I’m a mum myself, I cannot imagine how hard it must be to cope with a child who has a serious illness when you can’t just make them better. I decided then that I would really like to do my bit to help.

Claire Sweeney a liver transplant last year. He is now doing well but his mum, Julie, explained what the family had been through and gave me an insight into how important the information and emotional support which CLDF provides is to families.” Alison Taylor says Claire will be a real asset to CLDF: “As patron, Claire will be helping us to further raise the charity’s profile. As well as attending selected events, she will be joining in with press and publicity, taking part in social media activity and generally lending her support to our campaigns. We are delighted to have her on board and look forward to working with her.”

Now I’m a mum myself, I cannot imagine how hard it must be to cope with a child who has a serious illness when you can’t just make them better. I decided then that I would really like to do my bit to help.

“I have since been lucky enough to meet a little boy, Blair, who had been very poorly since birth and underwent


A lasting gift... Remembering us in your will is an incredible way to support the thousands of children, young people and families affected by childhood liver disease. Having an up to date will is the most important thing you can do to make sure that when you pass away your loved ones will be looked after in the way you want. It is also an opportunity to make sure that the cause you hold dear is not forgotten.

desire to help children and families affected by childhood liver disease and ensure support is there for them when they need it the most. If you would like to find out more about leaving a gift to CLDF please contact the fundraising team on 0121 212 6022 or visit for a copy of our Resources for Will Writing pack.

People who leave gifts to CLDF do so for a variety of reasons; some because they have found our services to be invaluable; others are passionate about supporting children’s charities - particularly small organisations like ours which are making a big difference. “I see a lot of charities and the vital work they do but, when making a decision about leaving a legacy, what I like about CLDF is that every penny is used to the full. I know my gift will be used well and have a real impact.” Jeremy Sparkes, CLDF supporter. Regardless of how they have come to know Children’s Liver Disease Foundation, they all share one thing: a

Lisa S/

Supporting psychological care By listening to and working with families and young people, the team at CLDF knows that the effects of a childhood liver condition are far reaching - stretching way beyond physical symptoms and medical treatments. Aisling Rollason, CLDF’s health and research information manager, says: “Understanding the psychological impact of diagnosis, acute periods of ill health, transplant or living with a long term condition is vital to our work. This is why CLDF supports the liver psychologists’ network to enhance our knowledge further, improve our services and help to facilitate the sharing of best practice.”

to discuss aspects of our services with them, such as ensuring that our literature provides families with consistent messages and supports their needs.” All of the psychologists working in the three paediatric liver services are a member of this network. These are Dr Kat Bilbrough, Dr Jacqueline Blyth, Dr Louise Clegg, Dr Anna Hames, Dr Victoria Hobday, Dr Rob Jobe and Dr Lucie Kanfiszer. To find out more about the psychologists in the network please visit

Clinical Psychologists from the UK’s three specialist paediatric liver units at Birmingham Children’s Hospital, King’s College Hospital in London and Leeds General Infirmary are supported to meet at CLDF’s offices in Birmingham three times a year. Aisling continues: “Our aim is to provide them with an opportunity to share experiences in a regular forum, taking time out from their clinical environments to exchange ideas, developments and approaches, and to develop standards for psychological care in paediatric liver across the UK. The meetings also give us a chance 06


Why there’s a buzz about Hive Hive, CLDF’s new social network for young people with a liver condition or transplant, has been designed by the people who use it. Here they explain why they wanted to get involved. Nineteen year old Emma, who has alpha-1 antitrypsin deficiency, says: “I had always thought that it would be great if people who had liver conditions could communicate with each other. Having had a transplant myself, I understand that it can become quite lonely at times. “When I first met someone who also had a liver condition, it made me feel normal. Although my school friends are really supportive I never felt that they understood what I was talking about so I never really spoke about it. To have someone take interest in my condition makes me feel comforted and to have someone who really understands makes me feel over the moon! I also think it is awesome that through Hive people can discover the opportunities that CLDF provides for young people.”

Twenty year old Elle, who has auto-immune liver disease, says: “It enables us all to connect and that’s important to me. I will never forget when I first became friends with someone with a liver condition - it relaxed me a ton. Finally I could talk to someone who knew what I was going through. This is what Hive can do!”

Twenty year old Stuart who has sclerosing cholangitis, feels that Hive is a real opportunity to help others: “There could be somebody out there who has been through the same as you and just needs to talk about it,” he says. “You can make a difference in somebody’s life.”

Graeme, who is twenty one and has biliary atresia says: “Hive is an amazing idea. It’s a great chance to talk to other people with a liver condition and realise it’s not just you. The best thing is that you can share personal experiences with others and not be judged.”

Catherine who is seventeen and has biliary atresia, loves the fact that on Hive, having a liver condition is something shared rather than a barrier: “I like learning about other people’s journeys and comparing them with my own. CLDF HIVE is there to fill with your experiences and celebrate with others in the great times!”

CLDF’s young people’s officer, Rich Wall, admits that building the right kind of platform was tricky: “Young people have been asking for something like this for a while now but it was important to get the format just right. Luckily, we’ve been wonderfully supported by our technical team at Born Communication. “For me the best thing is to see how supportive young people are of each other. They’re the experts on what it’s like to live with their conditions, and now they’re in a position to do something amazing with that knowledge. The more people we have, the stronger the community becomes. This is a chance to be part of something really special.” If you are aged 11-25 years and would like to join Hive visit today.


Two unsung heroes Carole, counts herself very lucky to be so close to her daughter Jade and grandchildren, fiveyear-old Peyton and two-year-old Carter, in every sense. The families live next door to each other and even have a gate in the garden fence! Peyton and Carter also have alpha-1. Carole has been with Jade at every single appointment - right from Peyton’s first blood test - and neither of them would have it any other way.

Finley, John’s inspiration

Childhood liver disease affects the whole family and at CLDF we regularly hear about the vital role which grandparents play. Here two grandparents tell us how they get involved. John is grandad to three-year-old Finley who has alpha-1 anti-trypsin deficiency. “My son has done a lot of fundraising for CLDF and I have always supported that,” says John. “It’s a great way of doing something positive to help Finley and other children. “Last year my wife Sheila said she would like to do the CLDF abseil down the bell tower at Manchester’s Trafford Centre, accompanied by my son and elder daughter. I was fully behind her until she hurt her wrist, so I volunteered to do it instead!

“We have always been a close, very open family. Jade and her husband are wonderful parents, coping brilliantly with the cards they have been dealt, but we are all aware that this is a lifelong situation and I’m more than happy to do my bit,” explains Carole. “In addition to the emotional support which any mum would give her daughter, one of my main roles is with the blood tests. I don’t like the fact that the children have to have them any more than Jade does but Jade is terrible with needles. If I take them in, I am calm, so the children are calm. It’s a small thing but it works for us.” Jade agrees: “I find it really reassuring to have mum with me for the children’s appointments. She’s a very calming presence. Basically if mum wobbles, it’s time to panic and if mum’s OK I’m OK!” Do you have hero grandparents in your family? Please get in touch with Mairead by emailing We would love to share more stories on our website.

“I have never done anything like this before and I have to admit I was nervous. When I arrived I looked up at this 60m tower and thought “What on earth am I doing?” “But you know what - I really enjoyed it! It was an amazing experience and despite all my initial nerves, I can’t wait to do it all over again. We raised £860 for CLDF and at 69 years old I am so pleased to be fit and well enough to do something like this to help Finley. To any grandparent who is wondering whether to undergo a similar challenge I would say ‘go for it’ - you’ll gain a new experience and you might even like it!”

Jade and Carole with Peyton and Carter

In loving memory Christine Marie Gray

20th February 1996 - 20th September 2013 08

One trustee’s unique perspective emotions she experienced. “I realised that I’d suppressed a lot of my feelings; like most teenagers and young adults I wanted to be just like my friends and peers. I didn’t want to be different, but I do remember very clearly my parents saying to me that this condition was what made me ‘me’ and that I should never feel sorry for myself. “After the conference I had many conversations with CLDF’s support team and this helped me to face some of the issues I’d ignored for too long. I appreciated then that this is one of CLDF’s most worthwhile roles: giving families and young people an opportunity to talk, share their experiences and gain strength from doing so - it sounds a simple thing but it is so, so powerful.”

Georgina with two-year-old daughter Matilda

CLDF’s trustees bring a wide range of skills, experiences and insights to how the charity is run; none more so than Georgina Sugden, who was diagnosed with biliary atresia shortly after her birth in 1981. I’m proud to be able to give something back to a charity that is in a unique position to help healthcare professionals understand young people’s needs and as more young people thrive with their childhood liver condition this work becomes increasingly important.

Georgina believes that CLDF has an enormously important part to play in helping young people move into adult liver services and to working with health professionals and hospitals to shape that transition, which she says is an urgent and growing need: “I’m proud to be able to give something back to a charity that is in a unique position to be able to help healthcare professionals understand young people’s needs and as more young people thrive with their childhood liver condition, this work becomes increasingly important. Although we’re a small charity I feel passionately that we can make a big impact.” Alison Taylor adds: “Georgina’s life experiences to date are invaluable to us at CLDF and we’re so grateful to the time and enthusiasm she brings to her role as a trustee. I also hope that her story will be an inspiration for any family who have recently received a diagnosis that their son or daughter has a liver condition.”

Now married with a two-year-old daughter, Matilda, Georgina believes her life experiences add a unique perspective to her work with chief executive Alison Taylor and fellow trustees. She says: “Living with a childhood liver disease means I’m able to put forward a patient’s point of view, particularly that of young people who are taking their liver condition into adulthood.”

What CLDF means to me

Georgina admits she’s been very lucky. Her Kasai procedure was successful and she enjoyed good health through childhood. Georgina’s life was full to the brim with athletics, dance, horse riding and swimming and although not a keen runner, she’s also taken part in several fundraising runs for CLDF, including the London Marathon. “That was a massive challenge for me,” explains Georgina. “My only goals were to finish and to raise as much as I could for CLDF, which had been such a huge support to my family. I’ll never forget that day. It was an amazing experience.”

“The CLDF team have become a lifeline and focus for our youngest daughter. Diagnosed with liver disease at 10 years old, we were left to our own devices until we were introduced to CLDF. They have taught us to understand, accept and manage her condition day to day. My daughter has gained considerable strength and determination from the team to inform others in school and outside about liver disease. Life is normal with CLDF - they are the information centre for many families who, without them, would live in the world of not knowing. Thanks guys.”

Georgina says that while growing up she had largely put her childhood liver disease to the back of her mind, but when CLDF asked her to speak at its national conference in her early twenties she was surprised at the rush of

Sheila, parent


Cooking up a very special event oversee the four-course menu. For each course, guests will be joined at their table by a renowned chef. The evening provides a unique opportunity to meet with some of the industry’s most prestigious and talented individuals. At the 2015 event chefs Jocelyn Herland, Claude Bosi, Claude Lamarche and Marcus Eaves created a menu to remember, with six Michelin stars between them. A table of 10 can be reserved for £1,850. Individual tickets are available on request.

On Monday 20 March 2017 our Chefs’ Gala Dinner will once again take place at The Dorchester, London, hosted by Executive Chef Henry Brosi.

For information about sponsorship opportunities or to reserve your table please call the fundraising team on 0121 212 6022 or email

Now in its eighth year, this prestigious dinner has raised over £945,000, helping to transform thousands of lives affected by childhood liver disease. Guests will be received at a glittering champagne and canapés reception, then enjoy an exceptional four-course fine dining experience, followed by a raffle and auction featuring highly original and much sought after items. Four of the country’s most eminent chefs will design and

Didn’t they do well? Part of our work is supporting children and families to adapt and feel able to get on with their lives. Here are some of the achievements our children and young people have celebrated recently. Sam Wainwright, 12, recently won a talent show at his new secondary school, competing with all secondary aged children. He sang and played on his guitar. Eleanor Brinkley has recently done a dance festival and won several medals. She was also Mary in the Birmingham Children’s Hospital Christmas Carol service. Lilly Beckett has completed her 800m swimming.

Mali Wheadon is 18 months old and post transplant... she does the DIY already. She instinctively knew how to use a spanner when her family were putting their new table together! Reece Bullock passed his driving test and is now the proud owner of a Corsa. He also has his first job working in Pharmacy Homecare. Ralph Cornwell got his 50m swimming badge. Millie Carter does street dance and came 1st and 2nd just a month after having a bleed. Her family are glad she doesn’t let liver disease define who she is and just carries on being a ‘normal’ girl.

Rachel Hadfield celebrated her first Christmas since her 2nd transplant.

Congratulations to Blake Proctor and Sophie Barwell for achieving pre-school gymnastics certificates and Bertie Yelf for earning several gymnastics badges.

Thomas Clark got an achievement award at school. His family are so proud of all his hard work and for just being a brave and lovely kind boy!

If you’d like to put someone forward, please give Rich a call on 0121 212 6024 or email


Moving to adult services reality is that there’s nothing different - apart from new doctors, environment and responsibilities. “So my top tips are: understand your liver condition and know your meds, what they do and the dosages you take; knowing when your appointments are (and not relying on your mum) really helps too. Asking questions while you’re in children’s services really prepares you for the ‘R’ of adult services. “My parents kept me in the loop from an early age about my liver condition. I didn’t understand when I was younger why they were doing it but it really helped prepare me for the responsibility that has come. As a result it has felt more natural for me to take responsibility, making the move so much easier.” Michael gave a presentation on moving to adult services at CLDF’s Glasgow Family Weekend

Michael Anthony, 16, who has recently moved to adult services up in Scotland, gave a humorous and honest account of his experiences at our Glasgow Family Weekend. Here’s his story. “Moving to adult services is a huge leap forward in life - a final destination - there’s nowhere else to move to. It’s a daunting and scary thought though: leaving the comfort of children’s services where they know you inside out and you know them. “The first time I was told I was moving to adult services I didn’t really think about it, but over time more questions popped into my head. After a while it got to the stage where I was petrified. “At one of my last appointments in children’s services, my doctor called me in - without my parents! Alongside my normal doctor there were two others from adult services, too. The usual conversation happened and then the adults’ doctors asked me what my worries were - and could they address them now, so that the move to adults would be better. I thought this was great - it really helped.

If you have any questions around moving to adult services, don’t hesitate to get in touch with our young people’s officer Rich on youngpeople@ or 0121 212 6024 or log on to and talk to other young people.

Up for a Challenge for 2016? Join Team CLDF by signing up for one of our new events… • • • • •

Prudential RideLondon - July 31st London to Paris Cycle Ride - August 31st Abseil Birmingham - September 17th Great Birmingham Run - October 16th Great South Run - October 23rd

Sign up and get started today by visiting or call a member of the fundraising team on 0121 212 6022.

“So I thought - I will be ready for adult services, but are they ready for me? “I’m the kind of guy who likes to enjoy life and have fun hospitals are boring - bloods - boo!! “On my first appointment in adult services I cracked a joke during my appointment - it went down well, not as bad as I thought it would, anyway. I’m really grateful to be able to build a relationship with them. “Being in adult services means that I should be a mature responsible adult - the big ‘R’ - responsible. However the 11

A question of transplant In the first of a series of Liver Life articles featuring frequently asked questions, Aisling Rollason, health and research information manager at CLDF, highlights the key issues surrounding liver transplant. Why are liver transplants necessary?

The facts are: Almost all children’s liver transplants in the NHS can presently be satisfied by a conventional transplant, but sometimes children can’t wait any longer as they’re very poorly.

Liver transplantation is considered for those with chronic liver disease when other forms of treatment haven’t worked. Transplant may also be necessary for those with acute liver disease.

There are a few NHS children who undergo living related liver transplantation.

How is it decided who gets each liver?

Up to now, outcome results from a conventional transplant are similar to living related transplant with no real difference in the rate of rejection.

Many people believe that the waiting list is like a ladder; that a child’s name is added to the bottom rung and moves up the ladder when the person at the top receives a transplant. This is not always the case. When a donor liver becomes available the surgical and medical teams decide who is the most suitable recipient using criteria including: blood group, size, clinical urgency.

What are the different types of liver transplant? Whole Liver

In this type of transplant, the liver is an appropriate size for the child and the whole liver is used. Split Liver

Livers can be divided so that two patients can benefit from one donor. The liver can be split into two lobes with the right lobe being given to an adult or older child and the left lobe or a left lateral segment (part of the left lobe) to a child. The cut surfaces are sealed. The new piece of liver grows with the patient. Cut Down (Reduced Graft)

A liver can also be made smaller to be made the correct size for the recipient, however, in this type of transplant there is only one recipient. Living Related Transplantation

In some cases, it is possible for a relative, usually a parent, to give part of their liver to their child. The donor has to be carefully selected to see if they are suitable as this is not always the case. Many parents feel they would like to give part of their liver to their child, especially at a time when they are desperately anxious about their child’s survival. 12

There are risks to the donor.

If this is an option which you and your family would like to explore, speak to your transplant team who will be able to give you more information. Auxiliary Transplantation In certain types of liver disease, particularly some metabolic diseases, part of a donor liver can be transplanted alongside the child’s own liver. The transplanted liver is able to carry out the functions of the liver which are not performed by the child’s own liver. Such an operation may also be carried out where there is the possibility of the child’s liver recovering, as can occur in some cases of acute liver failure.

How long do you have to wait for a liver transplant?

There are more people in need of a liver transplant than there are donated livers, which means there is a waiting list. The average waiting time for a liver transplant (chronic liver patients) is 145 days for adults and 72 days for children. However, the waiting time may be a lot shorter if someone is on a high-priority waiting list. Acute liver failure patients can’t wait that long, they’re on a super urgent waiting list, the average waiting time can be 3-5 days; sometimes it’s longer for babies.

Where do children’s transplants take place?

There are three paediatric liver centres in the UK. All UK children’s transplants take place at one of these centres. King’s College Hospital, London Birmingham Children’s Hospital Leeds General Infirmary

What are the risks of liver transplantation? There are a number of different complications which may occur including rejection of the new liver, infection, problems with bile ducts (biliary problems) and a hole in the small intestine (bowel perforation). There are many other complications which may arise but are less common and these are all discussed with parents prior to transplantation.

Sometimes a family receives a call that a liver has been found but when they arrive at the hospital the transplant can’t go ahead, why is this?

This may be because the liver is not suitable. At the time the child is called into hospital the new donor liver may not yet have been removed from the donor. The final decision about whether the transplant will go ahead will not be made until the transplant surgeon has looked at the liver and decided if it is suitable. Another reason may be the child’s condition. The child will be assessed to ensure they are fit enough for transplant but occasionally new problems may be found which make it unsafe to proceed with the transplant. This can be extremely disappointing but is done to give the child the best chance of a successful transplant.

What happens immediately after transplant?

At the end of the operation the child is taken to the Intensive Care Unit (often shortened to ICU, ITU or PICU). The surgical team provide feedback about the transplant procedure and any other updates.

Who can I speak to if I have any further questions regarding transplantation or support services?

If your child has been listed for transplant then your transplant co-ordinator can guide you through the process and answer any questions you may have. Your consultant and clinical nurse specialist are also there to answer any questions you have regarding transplant and of course, CLDF are always here for support and advice. Contact, call 0121 212 6023 or join More FAQs about life after transplant will be included in our next edition of Liver Life.

What CLDF means to me “CLDF are like a lifetime of support. Ten years on and they’re still my lifeline. Staff are amazing and offer the best support to families. I’ve never met a charity so helpful, through rough times and good times, they’re always there. They become friends and part of your family where you turn to when no one will listen. They’re full of amazing people and resources. I wouldn’t have got through these 10 years without them. There are tons of children and families that struggle every day and CLDF can help even if it’s just a quick message or chat. It can mean the world.” Jade, young adult


My first weekend organising this type of event I know a lot of the children attending wouldn’t go outside their comfort zones. Later in the evening we had supper and then games, which were for all age groups, including the best “mummy” using toilet paper and a dance-off, which the guys won hands down. Their talent knew no bounds! My friend Lucia and I sold tickets for the raffle, raising over £180. We were both very proud to represent CLDF on the evening as we’re becoming the older ones now and in a few years’ time we’ll move to adult services, which is a daunting prospect.

Megan and our CLDF families at our Northern Ireland Families Weekend

I believe that without the help and encouragement from CLDF and my family I wouldn’t have the knowledge or strength to accept what we have been given. On a cold and wet November morning my family and I set out to travel from Belfast to Omagh to attend CLDF’s Northern Ireland Family Weekend. This was our first weekend event and I was nervous about some of the activities I’d read about. I think mum was equally nervous, as we arrived over two hours early. This was to be our third CLDF event, which have become a source of communication and networking for us and I was looking forward to meeting the friends I’d made. I was diagnosed with liver disease at the age of 10, which was overwhelming in itself, but mum met a member of CLDF’s support team at the liver clinic and the rest is history. The weekend was held at an outdoor activity centre I’d never been to before and I was super excited as there were lots of activities organised by Laura and the gang. My only worry was that I wouldn’t be fit enough to partake, as I was unwell the week before, but I think a lot of that was nerves. We did zip-lining and off-roading - both of which were fabulous, and although the rain didn’t relent, it didn’t put off any of the eager kids tall enough to participate. Even the parents took part - we thought they were more petrified of the zip-line than us! With the wet weather the tracks were getting muddier each time a jeep went on them and the slippier they got the faster the drivers went. It was exhilarating, thrilling and wet. Without CLDF 14

Up early the next morning for breakfast and we headed out to take part in a treasure hunt. Unfortunately our jeep broke down at the top of a mountain while others whizzed past us, but we all had a blast. Then, before we knew it, it was time to say goodbye to the guys from CLDF before they headed back to the airport to return home. I can’t thank CLDF enough for the time and effort that they put into organising these events. Many may wonder ‘what’s in it for me’, but I would encourage them to attend. Not only do you get to meet the CLDF team, but you meet others like me and you have that one thing in common: we all have liver disease, many from birth and others though various diagnoses in their young lives. I believe that without the help and encouragement from CLDF and my family I wouldn’t have the knowledge or strength to accept what we have been given. Since we have been attending CLDF events our bond with the team gets stronger each time. I have found friends that know who I am, not to judge me, but I know they understand what I am going through. Megan, 14

What CLDF means to me “CLDF is a charity that we now call part of our family. You guys picked up the pieces for us three years ago and welcomed us to a world where we no longer felt alone in Marley’s journey. In return I have pushed myself to the limits for fundraising and will continue to do so until people are shouting from the rooftops about CLDF... and we feel that 1000s more people are aware of childhood liver disease and the charity itself.” Rachel, parent

The business of fundraising Organisations that choose CLDF as their charity partner are not only helping us to continue our work but can also benefit from creating opportunities to build stronger teams, enhancing motivation and staff loyalty. Department for Work and Pensions The Business Intelligence team at the Department for Work and Pensions has recently selected CLDF as its charity of the year following nomination by team member Adrian Fisher, whose daughter has a liver condition. 250 staff across the UK have various activities planned including a bike ride, treasure hunt, beach family day, firewalk and 5-a-side football tournament.

Sainsbury’s We are delighted to be nominated by three Birmingham City Centre Sainsbury’s stores as their charity of the year. Staff have already held a variety of events, including bucket collections and wear yellow days for Big Yellow Friday.

Jutexpo After a successful collaboration in 2015 Jutexpo, manufacturers of reusable bags, has again partnered with CLDF and hopes to raise an incredible £25,000 this year, including holding their Charity Ball for CLDF on 17th September. A big thanks to the Jutexpo team for supporting CLDF for a second year.

The Botanist Bar & Restaurant The Botanist Bar & Restaurant in Birmingham City Centre has selected CLDF as its charity of the year. Staff got the partnership off to a great start with a cocktail-making master class, a cocktail of the month for Big Yellow Friday and a quiz night.

Knowle & Dorridge Lions Club Knowle & Dorridge Lions Club has chosen us as one of three local charities to benefit from the proceeds of its winter walk and a fun run in May. The club is hoping to raise a minimum of £10,000, which will go towards funding CLDF’s National Conference and Family Weekend.

Waitrose Community Matters Throughout June, July and August CLDF will be one of the charities to benefit from Waitrose Community Matters’ Online Scheme. Every three months Waitrose shares a Community Matters donation of £25,000 between three national charities and shoppers will have the opportunity to vote for CLDF when they shop online on

A big thank you goes to all our partners for their support. For more information on how CLDF can support your fundraising at work or in the community, please call the team on 0121 212 6022 or visit 15

How I coped with my child’s diagnosis On Friday 26th June our lives changed forever. I received a phone call from the doctor at King’s to say the result had come back and Poppy has a genetic liver and lung condition called alpha-1 antitrypsin deficiency. We were heartbroken and devastated as we thought it was all in the past and that Poppy was healthy. It then dawned on us that as it was a genetic condition we could all have it, so we took a trip to King’s to discuss it further. Once there we were met by the fantastic CLDF team who were very welcoming and provided us with lots of useful information and support. After meeting with the doctor we decided to be tested to see whether I, my partner Chris and son Jack all had A1AD. After an anxious three week wait we finally had a phone call to say we were all carriers and do not have the condition. We were elated but saddened for Poppy.

Poppy as a baby

As all our families know, the news that your child has a serious liver disease comes as a shattering blow. Here Hannah shares her experience: On 13th April 2015 our second child Poppy came into the world after a rapid delivery at home. We were taken by ambulance to hospital where Poppy was checked over and given the all clear.

Poppy is now one year old and is a happy smiley little girl who is growing fast. To date she has had no health problems, although she is monitored at King’s every six months and will continue to do so until adulthood. Without the help and support from CLDF we would have struggled to come to terms with the diagnosis. Knowing we aren’t alone with this condition helps, which is why I have vowed to fundraise for this fantastic charity and raise awareness of A1AD. I, my brother Mark and good friend Chloe are taking up the huge challenge of running the Great North Run 2016 for CLDF. We hope this will be the first of many fundraising challenges for this amazing charity. If you would like to donate please visit

At 10 days, Poppy had a routine visit from the health visitor who said she was slightly jaundiced and recommended she get checked at our local hospital. We weren’t unduly worried as my son Jack had also been referred for jaundice and his cleared up within a week. In Poppy’s case however, the blood test showed that jaundice levels were very high and we were asked to bring her back again the next day. On this visit, they took more blood and prescribed various medications to treat the jaundice. After a few weekly visits, levels slowly decreased but we were still referred to the liver specialists at King’s College Hospital in London. On 5th June we met the paediatric liver team at King’s, where they carried out an ultrasound of her liver and took 15 blood samples to rule out various causes of the jaundice. The doctor then explained the jaundice had completely cleared up and the liver scan showed no sign of damage. They also explained one of the tests would take a week to come back but as far as he was concerned it was just routine. We were all relieved and happy, as it meant Poppy could stop her medication and start to lead a normal healthy life. 16

Poppy and mum, Hannah

Be on Yellow Alert Yellow Alert is CLDF’s campaign to highlight prolonged jaundice in newborns and appropriate referral. Last October we launched our Yellow Alert app aimed at healthcare professionals who have contact with newborn babies in the first weeks of life, such as health visitors and midwives. The free app is designed to make it quick and simple to spot the early signs of liver disease including a stool chart and has already had over 1000 downloads with more being downloaded all the time.

jaundice had never cleared but because it wasn’t severe enough to need light, it hadn’t raised any alarms. There was a real lack of awareness of liver disease.” For further information regarding the Yellow Alert campaign or if you are a healthcare professional who would like to download the app please visit

It’s vital that liver disease in newly born babies is identified and treated as early as possible. Rachel’s story highlights why: “I saw lots of health professionals with my daughter and raised my concerns about her colour and the fact that she wasn’t gaining weight but I was told to switch her to formula milk as I mustn’t have sufficient breast milk. A question about urine or stool colour at this time would really have helped. When she was four and a half months old I took her to a different GP as I was convinced there was something really wrong. He said: “She is yellow what colour is her poo?” and sent us straight to hospital where she was subsequently diagnosed with PFIC. Her

Volunteering Zainab Bibi, a CLDF volunteer and hive ambassador, explains why she got involved: “I was born with a liver condition and CLDF has supported me so much along the way. CLDF has changed my life - I had lost all confidence before volunteering, but having worked in a team I have gained a lot, including some amazing new skills. I’ve also attended clinics as a volunteer; I never thought I’d get that far.” Rich Wall, CLDF’s young people’s officer, says: “We want everyone who gives their time to feel valued. That’s why each young volunteer can, once they turn 14, qualify for vInspired volunteering certificates. These are nationally recognised awards - well regarded by employers - which reward people based on the number of hours they volunteer.” Zainab receives her vInspired award from Rich Wall, Young People’s Officer at CLDF

Whether it’s helping with CLDF Hive, raising funds or speaking in school assemblies, we have been delighted by young volunteers coming to us over the last few months. Would YOU like to join them?

Zainab adds: “To receive a vInspired award makes me so happy and proud that I managed to achieve something worthwhile that I’ve worked for. It’s basically a sign that I never gave up, no matter what setbacks I’ve had along the way.” If you or someone you know is aged 14-25 and wants to start gaining vInspired awards, please email, or send Rich a message on CLDF Hive. 17

Fantastic fundraisers Here are just a few of our amazing supporters who have been fundraising for us over the past few months. If you’re inspired, check out our website for ideas (big and small) of how you can help us to make a difference.

Jill and Ken’s New Year’s Day Swim Broadstairs’ beach was in for a shock on New Year’s Day, after thousands of people ran into the sea in support of CLDF. The event has been a tradition for the last 14 years and is organised by Jill and Ken Connell who have raised an incredible £45,000 for CLDF.

Brenda Sault & Stapleford Dance Club Thank you to everyone at Stapleford Dance Club who raised £685 from their raffle, after being inspired to support CLDF by Brenda and John Sault.

Emma Butterfield Emma’s been hard at work over the past few months, attending cheque presentations, organising fundraising parties and training for the Great North Run. So far she’s helped raise over £4,300 for CLDF in honour of her daughter Ada.

Jackie Redfern Jackie’s granddaughter Katie was born with biliary atresia, and was her inspiration for her sponsored weight loss. She not only raised over £150 but also lost over 2½ stone congratulations Jackie!

CLDF’s Abseil Team We were delighted to have Rob, John, Christina, Gemma, Stephen, Emma, Michelle, Rachel and Yvette join Team CLDF at the Trafford Centre Abseil! As a team they faced their fears and raised a fantastic £3,500.

Dee and Wayne Lothian Thank you to Dee and Wayne who have inspired donations from their family and friends in honour of their daughter Tiffany. Their online collection has raised a wonderful £1,300 and Tiffany’s sister Ruby is doing a ‘Wear Yellow Day’ at school.


Cathy Edwards With some help from Benjamin and Oliver (pictured), Cathy and her mum Diane organised a bingo night and raffle which raised £800. The event is so popular they have booked the venue for the next three years!

Sally and Phil Wise When Sally and Phil got married, they wanted to make CLDF part of their celebrations so asked for donations. Thanks to their generosity and donations from family and friends, they raised an amazing £4,400.

Josie Blackmore When Josie’s relative Ella was diagnosed with a childhood liver disease she got her friends and family together to do ‘Ella’s Walk’. The group raised over £1,000 and looked great in their 80’s fancy dress!

Duncan Edwards Duncan and his band ‘Jazz Dogs’ held a music event and raffle which not only ‘raised the roof’ but also raised £625 for CLDF.

Judith Green and The Ladies of Sutton Bridge Golf Club Thank you to Judith and the Ladies of Sutton Bridge Golf Club for nominating Children’s Liver Disease Foundation as their Charity of the Year. Their first event was a raffle which raised a fantastic total of £344.

Charles Constable Charles saw in the New Year a bit differently this year - by taking part in his very own half marathon. Inspired by his daughter Syrie’s positivity and braveness after being diagnosed with a childhood liver disease two years ago, Charles has raised an incredible £6,200 for CLDF.


Getting to know our Scientific Committee CLDF is indebted to members of its Scientific Committee whose role is to scrutinise the applications for research funding we receive, decide on which projects to fund and assess the projects’ progress. We’d like to introduce you to three members of the committee. Professor Humphrey Hodgson Emeritus Professor of Medicine at the Royal Free Hospital, University College London, Professor Hodgson is also the editor of Clinical Medicine, the journal of the Royal College of Physicians, a trustee of British Liver Trust and a trustee of the Liver Group Charity. He is also the chairman for the Scientific Advisory Board on Engineering and exploiting the Stem Cell Niche, a hub of the UK regenerative Medicine Platform. Professor Hodgson’s research interest in liver repair, growth and the development of liver support devices is equally applicable to both childhood and adult liver disease. Commenting on his role on CLDF’s Scientific Committee, he says: “I’m keen to help further research into an important and probably under-supported clinical area and I find assessing research proposals intellectually challenging and satisfying. Any research which takes new scientific knowledge and develops it therapeutically is particularly exciting.”

Dr Marianne Samyn Dr Samyn is a Consultant Paediatric Hepatologist and Clinical Lead for the Liver Transition Service at King’s College Hospital, London. She is involved with children and young people on a daily basis and for the last few years has run the multidisciplinary transition service at King’s. Dr Samyn has recently been elected as the paediatric representative for the Britsh Liver Transplant Group, is an active participant in The Lancet Standing Commission on liver disease in the UK and a member of the Paediatric Liver Steering Group. Dr Samyn believes it is important for clinicians to be part of a scientific committee. “Leading a transition service I’m particularly interested in research into young people and liver disease, including conditions which present in adolescence such as autoimmune, but also the longterm outcome of diseases such as biliary atresia and their impact on a young person’s life.”

Professor David Wilson Professor Wilson holds various honorary positions and committee roles related to his primary research interest of Inflammatory Bowel Disease (IBD) in Edinburgh, Scotland, in the UK and internationally. With a background in paediatric gastroenterology, hepatology and nutrition, Professor Wilson came to Edinburgh in the late 1990s to set up gastroenterology, hepatology and nutrition services for the south east of Scotland, where he also liaised with supraregional services at Birmingham Children’s Hospital and King’s. Professor Wilson says that he brings a broad view of paediatric liver research to CLDF’s Scientific Committee: “I share good practice in research, other academic activities, education plus patient and family support from other research areas in paediatric gastroenterology and nutrition in the UK as well as internationally. I’m particularly interested in research which uses large population groups and those transferring basic concepts in hepatology to individual patients.” Alison Taylor adds: Put simply, CLDF just couldn’t support the research projects it does without the members of our Scientific Committee, who bring world-class experience, expertise and enthusiasm to the role. We know just how important research is to our families and young people and thank all of the committee members, past and present for their sterling work. To find out more visit

What CLDF means to me ”To think how much of a hard time we had at the start of Poppy’s life and to come out of that knowing we met such beautiful and helpful people like yourselves is a credit to you all. It was great to see CLDF help us on our charity night also and I am sure it won’t stop after the Great North Run. I and my family will continue to help as much as we can.” Dale, parent


A day in the life using an advanced sequencing technology. However, I started to be involved in the genetics of liver diseases sometime before when, during my MSc at the University of Florence, I was selected to spend six months abroad as part of the Erasmus placement program. During that period, I worked on a small research project with Prof Richard Thompson at the ILS, where I applied my interest and knowledge in genetics to study a congenital form of acute liver failure. PFIC is a dreadful condition that is manifest during the first months of life and can lead to premature death in absence of adequate treatment, which in the majority of the cases is liver transplantation. The biological mechanisms underlying the disease have been intensively studied and several biological aspects of PFIC are now well understood. This knowledge has allowed researchers to move forward and discover potential targets to improve clinical management. Nevertheless, there is a proportion of paediatric patients that still remain with unknown genetic causes, suggesting that other possible biological pathways could have been altered and be the origin of cholestasis. My investigation therefore was focused on finding a new genetic cause for these cases, using the advancements in sequencing technology offers the possibility of studying millions of DNA fragments simultaneously. Giving hope

Dr Melissa Sambrotta is based at the Institute of Liver Studies at King’s College, London, where she is leading a study into the role of the TJP2 gene in Progressive Familial Intrahepatic Cholestasis (PFIC). Being a researcher means managing your own time based on your daily experiments. I try to have a routine, starting my day at 9.30 am and leaving around 6.30 pm, but most of the time I work after dinner and weekends, especially when deadlines are close. I only live a couple of miles away from the Institute of Liver Studies (ILS) and I travel by bike; this allows me to reach the other King’s College campuses along the south side of the Thames for meetings or courses. My workplace is composed of several researchers that investigate important biological questions in different liver conditions, and I feel lucky to work in this motivated and challenging environment. Why PFIC?

When I started my PhD, this sequencing technology was still new and it took a few intense years of producing and analysing data to become confident; it was during that time that I identified genetic alterations in a gene named TJP2 (tight junction protein 2) in a group of children with PFIC. We now estimate that the routine screening of patients with idiopathic cholestasis will identify at least 10% as having genetic alterations in TJP2. The discovery of more patients will then clarify the disease phenotype, enabling us to distinguish it from the other inherited forms of PFIC. The identification of the molecular basis of this cholestatic liver disease represents only the first step to a better understanding of the pathophysiological role of the translated protein, which subsequently will be an essential starting point for developing novel target treatments. Thanks to the support of Children’s Liver Disease Foundation, I now have the possibility to explore in more detail the biological consequences of these genetic alterations. I believe that my research studies and my daily work will have a long term impact on this disease and will give a new hope to these children and their families.

My interest in PFIC started with my PhD at the ILS which focused on identifying a novel genetic cause of PFIC 21

Mum Julie explains why she wants to make a difference Why do you enjoy fundraising for CLDF? CLDF relies on fundraising, so it feels good knowing all the funds we raise will help other families and young people. As a family it was also really important to help raise awareness of childhood liver disease. Last year Blair’s Uncle Stephen did the Trafford Centre abseil organised by CLDF. Along with raising valuable funds, it was great for us to meet other liver families also taking part. In 2014, our friends Steve Bunyan, Mark Fisher and Paul Winterton rode from Land’s End to John O’Groats and Duncan Farrar did the Manchester marathon.

CLDF has some truly amazing fundraisers all going the extra mile to help raise vital funds. Mum Julie explains why her family decided to get involved.

Between all our friends, family and local community, we’ve raised an amazing £31,152. The support we’ve received is fantastic and it’s great to know that every penny will help other families dealing with a diagnosis of liver disease.

Why did you choose to fundraise for CLDF? Our son Blair was born with a rare life threatening liver disease and subsequently needed a liver transplant. It’s been tough for our whole family, but CLDF has supported us throughout with information, emotional support and introducing us to other amazing liver families. At a time when we felt helpless to do anything to change his condition, fundraising for CLDF felt like we were doing something positive to fight it. What is it that you’ve done? We’ve held three annual Big Yellow Friday Comedy nights. It’s been great getting our family and friends together for a fab fun packed night. We’d never done any fundraising before, but have had incredible and generous support from everyone, including CLDF’s fabulous fundraising team. In 2013 our local community also turned the village of Hale yellow.

Any top tips for other people who want to get involved? I’d never done any fundraising before doing this, so if I can do it anyone can. Don’t be afraid to ask everyone you meet for help, support and sponsorship, you’ll be amazed how everyone will want to help you. Fundraising is all about having fun so I would say just go for it! To find out how we can support your fundraising please call 0121 212 6022 or email


Hints and tips for ward stays “Ear plugs if you want a sleep, clothes, entertainment such as an iPad, dvds as most wards are very kind and have Xbox or PS3s for older kids and another pillow for your bed.” “We wrote a diary the first time we were in for seven weeks as it’s hard to remember back to what happened and when sometimes. Also it’s good to recognise that everything takes a lot longer to happen in hospital, so take your patience with you!”

Getting ready for your first stay on a hospital ward can be a daunting prospect and one which our support team is often asked about.

“Comfy clothes and shoes, plus something of comfort for your child.”

We’ve gathered together some hints and tips from parents who’ve been there, which we hope you’ll find useful. “Take a decent hand cream, as you will forever be washing your hands and they will start to suffer! Oh and take your own teas and coffee as well!” “One for the mums - take a PJ top with an inner lining support. Makes you feel more ‘secure’ when walking around the ward at night.”

“Night time toys, books, lots of PJs/shorts and t-shirts. Some hospitals have washing machines on the ward, so we always take our own powder.” Please contact the families team on 0121 212 6023 or email if you need any specific help or advice, or visit our online discussion forum.

“A torch/book light, your own pillow, something to read, headphones, a travel mug to take hot drinks onto the ward (not every hospital allows this), flip flops (hospitals are hot even in winter), phone charger.”

What CLDF means to me

“Lip balm and moisturisers as it’s not just hands that get dry. And definitely pain killers, as the ward can’t usually give you anything and you can’t always get to the shop.”

“CLDF were there for us from the very start in January 1999 - I will never forget them. My grand-daughter was 9 weeks old and my youngest daughter was 19 years old. What a journey we’ve had but CLDF have always been there for us as a family. Now look at us in 2016. She had her transplant two months ago and is doing wonderfully at the grand old age of 16, almost 17. Thank you CLDF for all your support to our kids and their families.”

“Puzzle books (to distract your brain from overthinking) and I know some Mums who have got into adult colouring books.”

Terry, grandparent

“I remember when we were in for nearly three to four weeks after my son had his Kasai, I took my own cups, plates and cutlery, as sometimes there just wasn’t enough in the ward kitchen to go around for the parents.”

36 Great Charles Street, Birmingham B3 3JY 0121 212 3839 | | Registered Charity Number: 1067331 (England & Wales); SC044387 (Scotland) Registered Company Number: 3431169




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CLDF events are a great way to meet others, share experiences and have fun. There are lots of opportunities for families and young people to get together - and with venues selected around the UK, there’s bound to be something happening near you.

2016 Saturday 23 - Sunday 24 April


Family Weekend

Saturday 14 May


Family Day

Saturday 25 June



Saturday 9 - Sunday 10 July


Wild Camp

Tuesday 26 - Friday 29 July

CLDF Breakaway (formerly Closer to the Edge)

Saturday 13 - Sunday 14 August


Wild Camp

Saturday 24 - Sunday 25 September


National Conference and Family Weekend 2016

Saturday 12 November


Family Day

Saturday 3 December


Festive Family Day

2017 Saturday 4 February


Monday 20 - Friday 24 February Saturday 11 - Sunday 12 March

Family Day Talk, Tell, Transform

Northern Ireland

Family Weekend

For more information on all these events please visit And don’t forget - bookings are now open for our biennial National Conference and Family Day - see page 2 for more information and visit to reserve your place today.