CLDF Liver Life (Issue 04/2017)

Issue 04/2017

Cover: Seven year old Kody (left) and two year old Daniel made friends at CLDF’s Northern Ireland Family Weekend at Todds’ Leap in March

We have been incredibly humbled by the continuing efforts of our fundraisers over the past six months. You’ve walked, cycled, crawled, swum, dieted, shaved heads, climbed mountains and jumped out of planes for us and we simply couldn’t do what we do without you. It’s been another challenging year for us all but with your help we’ve been able to deliver fantastic projects, events and support when we’ve been needed most. Included in the issue is our 2016 Impact Report so you can see for yourself some of the highlights of our year.

Welcome to the 2017 edition of Liver Life Our year has been one of the busiest to date.

We have enjoyed meeting new families and young people and keeping in touch with familiar faces across the country at clinic visits and projects.

October 2017 sees the launch of our new Shropshire Family Weekend. The feedback from our weekend events in Scotland and Northern Ireland has been fantastic so we urge all our Welsh and English based families to sign up to this one (go to childliverdisease.org/events).

Talk, Tell, Transform and CLDF Breakaway 2017 proved incredibly successful. We continue to be amazed and humbled by the tenacity and talents of the young people who participate in our projects and in August we will mark another first for the charity with the launch of the CLDF Weekender – see page 16 for details.

Research funding continues to be a key area of focus for the charity. This year we welcome Professor Salim Khakoo as Chairman of CLDF’s Scientific Committee and say a huge thank you to Professor John Iredale, who is standing down after seven years as Chairman, for his excellent work on our behalf (see page 15).

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We want you to receive our information in the best way for you. We are able to send Liver Life by email, so if you would prefer this please do let us know – it’s the same information and CLDF can spend less on postage. Just email info@childliverdisease.org I hope to see you at one of our family events soon and please do get in touch with me if you have any feedback or queries about CLDF. We love hearing from you.

Alison Taylor Chief Executive ceo@childliverdisease.org

Date for your diary We are delighted to announce that CLDF’s next National Conference and Family Weekend will take place on 6th and 7th October 2018 in Stratford upon Avon.

You can attend just for the day or for the whole weekend. Details are still being finalised but make sure you pop the date in your diary. We will be letting everyone know when and how to book at the start of 2018 so please ensure you have opted into receiving updates from us (see page 09).

contents 05 Didn’t they do well?

12 Building family connections

CLDF funds new hospital equipment

04

Didn’t they do well?

05

Day in the life of a researcher

08

We need your tick!

09

Always on Yellow Alert

10

CLDF on the road

10

Join the community

11

It’s a Hive of activity

11

Building family connections

12

It’s the Nicest Job in Britain

14

New Chairman of Scientific Committee

15

CLDF plans first weekender

16

Marathon success!

16

22 Dental care for children with liver disease

2016 Impact Report

17

Ten years of Big Yellow Friday

21

Gala night at The Dorchester

21

Dental care for children with liver disease

22

Making your voice heard

24

A day for remembering

25

Literature update

25

Fantastic Fundraisers

26

Big Bear’s Picnic is back

29

Helping to support siblings

30

Face your fears with the CLDF abseil

32

Big night out and a long night in

33

My liver disease didn’t stop me!

34

Instant support from new app

35

26 Fantastic fundraisers 34 My liver disease didn’t stop me!

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CLDF funds new hospital equipment In 2016 we decided to make funds available to each of the three specialist paediatric liver centres, Birmingham Children’s Hospital, Leeds General Infirmary and King’s College Hospital in London. We wanted to support the units so they could buy equipment that they felt would help improve patient care. Each unit was awarded £10,000 and over the past couple of months it’s been fantastic to catch up with the different centres and see the new equipment in action.

King’s College Hospital decided to purchase an Av400 Accuvein machine which helps find suitable veins in children and eases some of the difficulties associated with the insertion of cannulas and carrying out blood tests on the ward.

This device works by shining an infrared light on the area, observing it with a camera, and projecting the image onto the patient’s skin, which makes finding the right vein a lot easier. The machine is already in use at King’s and the ward staff and patients love it!

The remainder of the grant was spent on four portable monitors which allow children to move more freely around instead of being bed bound. This has proved especially beneficial for children and young people who are well in themselves but are still on a small amount of oxygen.

They can even go to the school room whilst in hospital or for a walk to the park.

Alison Taylor visited the team at Leeds to see all the equipment they purchased including a new fish tank Birmingham Children’s Hospital used their award to go towards the purchase of a Fibroscan machine which they now use to assess liver fibrosis.

“The Fibroscan gives families instant information about the health of their child’s liver,” said Principal Specialist Nurse, Lindsay Hogg. “It has helped to explain why they may need further investigations or different treatment.”

Leeds General Infirmary utilised their funds to purchase new equipment and television monitors for the new liver ward at the hospital. Play equipment was also purchased. It was fantastic to visit the new ward a few weeks ago and see all of the items being used. One of the items, the new fish tank, is just super. Aimed just at the right height for children it’s the first thing patients see as they come onto the ward.

Each unit was awarded £10,000 and over the past couple of months it’s been fantastic to catch up with the different centres and see the new equipment in action.

CLDF has been so pleased to be able to support the amazing work done at these units by enabling staff to buy what they felt would be really beneficial to their patients.

Niamh Whelan the Ward Sister at ‘Rays of Sunshine Ward’ King’s College Hospital London is pictured with the Accuvein machine 04

Didn’t they do well?

We love to shout about the achievements of our amazing young people. Here is a round-up of what some of them have been up to since the last issue of Liver Life.

Lydia leads the way Sixteen year old Lydia, who received her liver transplant when she was six, loves cycling and has taken part in the Transplant Games since 2015. She won the Under 15 3km time trial at Newcastle, the Under 17 road race and the 5k time trial at Liverpool.

“This year Lydia will be competing at the World Transplant Games in Malaga and is on course to storm to a Gold medal in the 5km time trial,” says dad, Richard. “We train together most weekends and I am struggling to keep up!

“In May Lydia was awarded Young Achiever of 2017 in the Yorkshire Women of Achievement Awards in recognition of everything she does to promote organ donation.

“On top of all of this, Lydia has done her GCSEs this summer and also cares for her two horses Henry and Midge. I’m a very, very proud father.”

Kate’s off on her travels Kate was diagnosed at 11 with primary sclerosing cholangitis. “A talented artist and capable student, her senior school years were blighted by illness and when she finally left college, she had only managed three GCSEs and a diploma,“ says mum Alice. “However last October aged 19 she flew to Australia by herself and has had a fantastic time making lots of new friends and learning that she can cope and experience a great life without us.

She came back in June to take her English GCSE and will shortly be off again on her travels. I really never thought this day would come. It has given us all a new lease of life. Obviously the disease has not gone away and there will undoubtedly be difficulties ahead but we are making the most of the respite.”

Travie’s a double winner Six year old Travie, who received his liver transplant when he was four, won the awards for Penalty King and Goal of the Day at his football playscheme during the Easter holidays. Here he is proudly displaying his Goal of the Day trophy.

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Champion Kayla is recognised with award

Lauren joins the Mermaids!

Lauren raised awareness for CLDF while taking part in Miss Mermaid UK and was delighted to be awarded Miss Kent!

In March eight year old Kayla received the Youth Champion Award at the Provost Civic Awards in Clydebank. Kayla had been nominated by her school, Kilbowie Primary, and her brownie pack for the work she has done in fundraising for CLDF and raising awareness of children’s liver disease.

“Kayla had no idea she had been nominated for this award so she was delighted and very proud to receive it” says mum, Elaine.

“Miss Mermaid UK isn’t like any other pageant.

They are very charity orientated and support the conservation of marine life,” explains Lauren.

“We had to say a little about ourselves on stage (which was terrifying) and had a three minute interview with the judges.

“The next heat is at the end of July I’m nervous for this one already! But I get to wear a mermaid tail and swim under water, so that should be pretty exciting!”

Bobby’s big day Three year old Bobby who has biliary atresia, has just started pre-school. “It is only for a few hours a week but it’s the first time we have been apart since he had his kasai and he has made me the proudest mum ever” says mum, Kelly.

Transplant joy for Lilah “My daughter, Lilah, was lucky enough to get her transplant in March after being on the list for just four and a half hours,” says mum, Daisy Louise. “She has done brilliantly since and we’re so proud of her.” Lilah is pictured here before her transplant (left) and now with her baby brother Beau.

New friends for Daniel Daniel, who is nearly three, started Ballymacash playgroup in March. “He had a very upsetting first day but after that, he’s settled in great,” says proud mummy Amanda. “He’s made lots of friends and his teacher said he’s a real wee character who chats away like a little man”. Daniel is pictured with big brother Cody.

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Ralph makes cricketing debut In April seven year old Ralph, who has been a keen cricket fan since he was five, played his first competitive cricket match for his club’s Under 11s side. He didn’t get out, bowled a couple of overs and now, despite his age is regularly practising with the Under 11’s. Go Ralph!

Games success for Phoebe “Phoebe, who has biliary atresia, had a transplant in May 2004 at the age of seven months. Our angel donor and her family have ensured that Phoebe, now 13 years post-transplant, always lives her life to the maximum,” says mum, Dionne.

“She participates in the British Transplant Games each year for her team, Leeds Children’s, has won numerous medals over the years and has spread so much awareness of organ donation by doing so. As a family we are incredibly proud of her. Her liver donor was an amazing selfless person who gave my baby girl her gift of life and we hope she would be just as proud of Phoebe as we are.”

Alex keeps calm and carries on “I am so proud of the way Alex, who has biliary atresia, handled things by himself when he became ill with cholangitis during his first year at Sheffield University,” says mum, Chris. “He got to a strange hospital – after googling first to see which hospital had an A&E department and then ordering an Uber to get him there! He managed to tell them what was wrong and arranged treatment for 24 hours until we were able to join him whilst he was admitted for a week. He never makes a fuss or complains, and was just really practical about it all. We were impressed that he could be so brave and calm.”

Bronze Award for Jaydon Fourteen year old Jaydon has just completed his Bronze Duke of Edinburgh Award. “He did amazingly well considering his health has been up and down and he was having a flare up at the time of his practice expedition,” says mum Laura. “It’s a real achievement and we’re so proud of him.”

Bonnie’s gift from brave nanny Bonnie, who has biliary atresia, is now one year post liver transplant. “She received her gift of life from her brave nanny at Kings, when she was just 11 months old and was discharged after just 11 days, says mum Kerrie. “She is doing ever so well - the change is amazing. To look at her now you would never imagine she has been so poorly.”

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Day in the life of a researcher

By Martyn Howard, PhD student at University of Manchester Apart from the essential morning coffee, no two days are the same. As I am still in my first year much of my time has been spent on developing my understanding of the subject area and training on the use of equipment, sample preparation, and analysis of data.

This is on top of acquiring the necessary materials, such as tissue samples, to begin the project. I also attend meetings and conferences where I am able to share my findings, discuss any issues and get new ideas on how to progress and improve, as well as foster collaborations with other research groups or surgeons. I am now in the transition period where more of my time will be spent in the lab and analysing the data that is produced. For me, this is the most enjoyable part of my project, where I feel that all the training and preparation to get to this point have been worthwhile, producing something physical that can be used towards building the computer models and simulations.

state of an individual all have an impact on how effective the liver is at its job. This means that the drug dosage should be tailored to each person to maximise its effectiveness and reduce the risk of side effects.

Pharmaceutical companies utilise many different models during drug development to examine how they will interact and behave within the body. While there are many well-documented models for the adult population, for numerous reasons, the same cannot be said for paediatrics. Therefore, doctors are left with no option but to generalise from adult models and use their experience to adjust drug dosages. This project aims to remove the ‘guess work’ in drug dosing adjustments for paediatric patients with liver disease and provide evidence-based predictions from computer models to optimise treatment for each person. This will be based on knowledge gained from tissue samples in relation to the proteins involved in drug transport and metabolism.

For me, this is the most enjoyable part of my project, where I feel that all the training and preparation to get to this point have been worthwhile, producing something physical that can be used towards building the computer models and simulations.

How will this be achieved?

So, what is the project?

To ensure that the models are robust and representative of the sub-populations within paediatrics (e.g. infants, school age children, teenagers), a lot of data from many different samples needs to be generated from labbased work. I work with very small amounts of healthy and diseased liver tissue that I process to extract the proteins inside. These are then further processed so that specialised equipment can analyse and quantify the proteins relevant to drug metabolism and transport.

This is the important data needed to model how drugs behave in the body. As this is still a relatively new area and there is no standardised method, I am currently optimising the method to help improve the quality of data that is produced. Once this is complete I will write up my findings and then start working on the next mini project, determining the differences between healthy and diseased livers in paediatric samples. This will provide some of the data required to feed into models that I will be using in my final year of my PhD.

The liver houses the majority of the proteins that are important for breaking down and removing drugs from the body. Variation in weight, size, age and disease

The University of Manchester project is just one of the research projects which CLDF is currently funding. To find out more visit childliverdisease.org/researchprojects

Martyn Howard, PhD student at University of Manchester

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Tell us how you want to hear from us We need your tick!

Children’s Liver Disease Foundation will soon only be able to contact you if you have given us permission to keep in touch.

Due to changes in data protection legislation, we soon won’t be able to contact you about any of our activities unless we have a tick from you. In other words, we need your explicit consent to keep in touch with you.

So, if you’d like to continue to receive our updates; Liver Life magazine; information about our support services and family/young people events; fundraising events and activities and any other general information about our work, we need you to tell us how you want to hear from us. By only contacting you in the way you choose, we can also be more cost effective with our communication methods and marketing activity.

You can read full details of our Privacy Policy at childliverdisease.org/privacypolicy

What do I need to do?

The letter enclosed with this copy of Liver Life contains information on everything you need to know. Please read the letter and then let us know your contact preferences by completing the form and returning it to us in the prepaid envelope we’ve provided.

Alternatively you can complete the form online at childliverdisease. org/contactpreferences which will save us money on postage!

What will happen if I don’t tell you my contact preferences?

If you don’t let us know how you want to hear from you’ll miss out on receiving all our news and information - so if you’d like us to continue to keep in touch with you, please let us know!

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Always on Yellow Alert CLDF’s Yellow Alert campaign aims to increase awareness of the signs and symptoms of liver disease in newborns. Our Yellow Alert pack is a resource for healthcare professionals containing information on the signs of liver disease in babies and we aim to get this information to as many healthcare professionals as possible to ensure they are aware of when to refer babies who may have liver disease.

Last year we did a lot of work with health visitors and this year we are delighted to report that we are working with the Royal College of General Practitioners (RCGP) to raise awareness amongst GPs. An article all about Yellow Alert was included in the Primary Care journal, The Digest, in May and we were also invited to exhibit at the Primary Care Society for Gastroenterology Spring Meeting in order to raise awareness amongst GPs. We’ll be reviewing the Yellow Alert campaign materials throughout 2017 and ensuring they are up to date and based on the latest clinical evidence. We then plan to introduce a campaign aimed at new parents so they are aware of the signs and symptoms of liver disease and when to seek medical advice.

We know this is a really important issue for our families so if you would like a Yellow Alert poster for your local doctors’ surgery or clinic please get in touch!

CLDF on the road Attending medical conferences is a great way for CLDF to engage with healthcare professionals. CLDF had a stall at the BSPGHAN (British Society of Paediatric Gastroenterology, Hepatology and Nutrition) conference in January, which was an opportunity to catch up with paediatric liver specialists from around the UK and let them know about everything we have been working on.

The BSPGHAN conference in January 2017 was one of the events CLDF attended this year

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CLDF’s Health and Research Information Manager, Aisling, has also attended a number of health visiting events such as the Institute of Health Visiting and CPHVA (Community Practitioner and Health Visitor Association) annual conferences. Attending these events gives us the chance to meet face to face with health visitors and tell them about Yellow Alert and the key signs of liver disease they should be aware of, as well as letting everyone know about CLDF and how we can add value to the work they do.

Join the community!

When you have a child with a liver condition, family and friends can be really supportive but often, only people in the same situation really understand what you are going through. This is why so many parents find Health Unlocked helpful. It’s a community of over 1,000 people whose families have been affected by childhood liver disease. Sarah* explains why she joined:

One of the things I like about Health Unlocked is that it’s anonymous. No-one is there to judge you – everyone is supportive so you can ask questions without feeling silly. I would definitely recommend it to any parent or carer who isn’t in regular contact with others.”

If you’re not already a member then find out what it’s all about. Health Unlocked is free and easy to join. Just go to healthunlocked.com/cldf

“After my daughter was diagnosed I wanted to find other people in my situation. I had so many questions I wanted to ask. But of course because of the rarity of childhood liver disease, you’re not that likely to bump into someone else who is affected. That was my original reason for joining.

It’s a Hive of activity Last year we announced the launch of Hive, our new social network created by young people exclusively for young people (aged 13 – 24) with a liver condition or a transplant. Now we’re delighted to report that Hive currently has 233 users and in the last six months there have been 183 new friendships between Hive users!

Molly* says: “I love Hive because it lets me feel like I’m not alone. I’ve never actually known anyone with what I have and it’s nice to know that there’s always someone here who knows what you’re going through. As well as that, I generally find it hard to make friends with people as I have to then tell them about my liver, which I hate having to do but talking to people on here you never have to do that because they already know.”

Zainab adds: “Hive is a safe place to talk about your feelings. If you’ve had a bad day, you can share it with people and no-one judges you. I have made friends with people that I wouldn’t normally have found myself talking to – and it’s all because of Hive!”

If you are a young person with a liver condition or transplant and have not yet joined, then find out what it’s all about! Just go to cldfhive.co.uk

*Names have been changed

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Building family connections in Northern Ireland Marianne, Lucyellen, Abigail and Catherine

CLDF’s events provide a valuable means for families to connect with each other. In 2017 we have three family weekends in the programme.

The first of these took place at Todd’s Leap near Omagh, in Northern Ireland. And while the adults and older children enthusiastically joined in everything from archery and ‘last man standing’ to zip lining and body zorbing, there was a bouncy castle and plenty of craft activities for younger guests.

“We love to get out to all parts of the UK and it’s particularly nice to see our young people having such fun away from a clinic setting” says Chief Executive, Alison Taylor. “And the lasting benefit of these events is that by bringing families together in this way, we can enable them to build networks to support each other.”

Two mums who are doing just that are Catherine and Marianne from Lisburn.

CLDF have been so supportive...

It’s lovely being able to take time out to catch up with old friends and show ‘new’ families that things can get better.

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“I thoroughly enjoyed the weekend,” said Catherine whose two year old daughter, Abigail, has biliary atresia.

“The highlight for me was when four of the other liver mummies convinced me to get out of my comfort zone and piled me into the back of 4x4 with them. We were all strapped in and taken on a “rally tour” at 50 miles an hour around a very mucky track - I can safely say that’s ticked off my bucket list!”

“CLDF have been so supportive”, added Marianne, whose three year old daughter, Lucyellen, also has biliary atresia and received a liver transplant when she was seven months old. “It’s lovely being able to take time out to catch up with old friends and show ‘new’ families that things can get better.

“Us Lisburn liver mums try to meet for a coffee once a month. We share our experiences of our kids’ difficulties with liver disease but we also beam with pride at how far our kids have come against some terrible odds. When Lucyellen was first diagnosed with biliary atresia, and again when she had her transplant, I felt lost and so alone. My family were so supportive but didn’t quite ‘get it’. It means the world to me meeting others in the same situation - people I can count on to tell me I’m being daft, give me some encouragement and be a friend. If it hadn’t been for CLDF we would never have met these families and they are all terribly important to us now - I’m proud to be part of our wee liver family in Northern Ireland.”

Braving the zip wire with some help from Dad!

Emily and Dylan work off some energy!

If it hadn’t been for CLDF we would never have met these families and they are all terribly important to us now - I’m proud to be part of our wee liver family in Northern Ireland.

“We were delighted to welcome eight families to Todd’s Leap who had never been to a CLDF event before,” said Alison Taylor. “And it was particularly pleasing to hear that all of those families had made new connections with whom they said they were likely to stay in touch. We look forward to seeing them all again.”

If you’ve not made it to one of our events so far this year, you’ve still got time. Check the list below to see what’s happening near you and then give our Families team a call to find out more. We’d love to see you there!

CLDF Events 2017 Event

When

Where

Especially for…

CLDF Weekender

August 4 – 6

Derby University

Young people aged 16 - 24

Wild Camp

August 19 – 20

Oxfordshire

Children aged 7 – 11 with a parent/carer

Central England Family Weekend

October 14 – 15

Shropshire

Families

Festive Family Day

December 2

Leeds

Families

To find out more or to book go to childliverdisease.org/events 13

Working at CLDF – it’s the Nicest Job in Britain!

Meeting nurse Sarah Pugh at Birmingham Children’s Hospital

In February we were joined by Alice Biggar, who officially has the Nicest Job in Britain, a yearlong post in which she spends a week at a time working for different charities. Here are some of her thoughts on her week with CLDF: “Whilst the medical implications of childhood liver disease are vast, there is also a significant social and mental impact on children and their families. This week I have been learning a little more about the work Children’s Liver Disease Foundation does to support those people on their journeys.

“The true impact of liver disease is best conveyed through the stories of the children affected. The charity’s project ‘Talk, Tell, Transform’ (TTT) is a residential workshop in which young people between 16-18 create and share their experiences through the power of video. I caught up with a number of the young people at the beginning of their week at TTT. Some were understandably feeling a little hesitant, it being the first time they have met others with their condition or talked publicly about their stories.

Other children had met each other before on Breakaway, the charity’s bush craft and survival week for 12-15 year olds or met on Hive, the charity’s social media platform. I quickly got an insight into the breadth of the community that CLDF has helped to foster for these young people.

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“Three days later I caught up with the TTT young people again at their ‘premiere and awards evening’, a chance to showcase the videos they had been spending the week creating. It was remarkable to see the transformation in some of the individuals, in just a matter of days - postures had lifted, friendships had formed and heads were now high as they spoke proudly and confidently about their conditions. Watching the videos together was a very emotional experience for everyone in the room. The films were eye opening and the fact that they were written and produced by the young people themselves added a refreshingly frank truth about growing up with the condition. Despite my short encounter I felt a real pride in the young people for their bravery in opening up about their stories and allowing others to gain hope and inspiration.”

It was remarkable to see the transformation in some of the individuals, in just a matter of days postures had lifted, friendships had formed and heads were now high as they spoke proudly and confidently about their conditions.

“I joined CLDF the week before Big Yellow Friday so I leapt at the chance to get on board the big yellow bandwagon. I was able to procure just over five gallons of custard for a bargain price, a local farmer kindly allowed me to use his big yellow JCB digger and together we had all the ingredients of a pretty neat video. Storm Doris presented a challenge when executing our custardy plan but it all came together!

Despite my short encounter I felt a real pride in the young people for their bravery in opening up about their stories and allowing others to gain hope and inspiration.

“As part of my week I visited Birmingham Children’s Hospital, to meet with specialist nurse Sarah Pugh. I learnt that the majority of the information booklets given to patients by healthcare professionals on child liver disease are produced by CLDF and this allows nurses like Sarah to help families make an informed choice about treatment.

“I had a marvellously big and yellow week up in Birmingham with Children’s Liver Disease Foundation and my thanks in particular to Jo for organising. It has been eye opening to learn more about liver disease and the great work the charity is doing to support those affected on their journeys.”

To find out more visit nicestjobinbritain.co.uk

Alice joined in the spirit of Big Yellow Friday

New Chairman for CLDF Scientific Committee CLDF’s Scientific Committee is an eminent body of leading medical professionals which assesses the research grant applications we receive and reviews how research projects are progressing. This year Professor John Iredale, Pro Vice-Chancellor for Health at the University of Bristol, has decided to stand down as Chairman of the committee and his position has been taken by Professor Salim Khakoo, who is Professor of Hepatology at Southampton General Hospital.

“I am delighted to take over this role from John Iredale” said Professor Khakoo. “He has done an immense amount of work for CLDF in leading the scientific committee. Research is at the heart of new ideas for looking after, and treating, children with liver disease. I very much hope that through the on-going work of the scientific committee we will continue to improve the children’s lives.”

Alison Taylor added: “The Scientific Committee play a vital role for CLDF as our research projects give hope to so many families. We are grateful to John for all his work as Chairman and look forward to working with Salim as we take our current projects forward and seek out new areas of research.”

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CLDF plans its first Weekender August 2017 sees our very first CLDF Weekender, a special event for young people aged 16 and over which will take place at the University of Derby.

“We’re very excited about the Weekender – it’s an opportunity for our young people to build on the friendships we have helped them make over the years and find new people to connect with” says Acting Support Team Manager, Carol Hebden.

“We’ll also be giving them the chance to discuss the challenges of life as a young adult with a liver condition or a transplant. They will be able to chat to experts on health, careers and general well-being.”

The Weekender is very much an event designed by young people for young people. Amongst those helping to organise it is 17 year old Gemma who explains why: “I was lucky enough to take part in CLDF’s Talk Tell Transform last year and during that week I met people who have now become not only my friends but a really valuable support network. I can honestly say that if I didn’t have these people around me now, I would feel very differently about my liver condition.

“Every young person who is living with a liver condition should have access to this kind of support because it makes a massive difference. This is my chance to make that happen and I’m so pleased to be involved.”

Keep an eye on our website for a report on the Weekender from mid-August onwards.

Gemma is helping to organise the Weekender

The weekender is organised by young people for young people

Marathon success for CLDF! This year Team CLDF was made up of a fantastic group of 21 runners who took part in this iconic race in April.

It was inspiring to see them fly past us at the 600m to go point, knowing that they were all raising awareness of childhood liver disease. We know how much time, effort and dedication it takes to undertake such a challenge and we couldn’t be prouder of our team, which raised a staggering £43,708 between them!

If you are tempted by the idea of running a marathon, a half marathon or maybe doing a skydive for CLDF go to childliverdisease.org/challenges and find out how you can get involved.

CLDF London Marathon Team

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2016 Impact Report Continuing to make a 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 and all require a lifetime of care.

We work hand in glove 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 these inspirational young people fulfil their potential in life.

During 2016 the board approved the decision to change our accounting year to increase efficiency, as a result this report covers the nine month period from 1st April to 31st December 2016.

Meeting the challenge 2016 was another year of challenges and triumphs. We have continued to develop our support and information provision and have reached an incredible number of families and young people. Our fantastic supporters and staff team have made this possible in the midst of continuing financial pressure. Our families and young people continue to tell us of the huge difference we make to their lives and that’s what we hold dear to our hearts. We exist solely to support their needs and everything we do across all our work streams is focussed on that. Together we’ll make sure we are here for all those who need us.

Alison Taylor, Chief Executive

Funding CLDF’s work

1 April 2016 - 31 December 2016 (9 months) Incoming resources Unrestricted voluntary income

£447,290

Restricted voluntary income

£93,135

Investment Income

£13,892

Total

£554,317

Resources expended Education and awareness

£216,993

Emotional support and activities

£214,137

Research

£64,984

Fundraising and publicity

£143,321

Total

£639,435

This summary is taken from our financial statements.

To request a copy of our full audited accounts, please contact the Charity.

Signed on behalf of the Board of Trustees:

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 inc. downloads Unique visitors to childliverdisease.org Number of pieces of media coverage

16,320

Increase on same period in previous year

133,277

Increase on same period in previous year

168

33% increase on same period in previous year

Spreading the word to medical professionals is an essential element of our work. During the year we had a presence at five conferences including: • CPHVA - Community Practioners and Health Visitors Association • BSPGHAN-British Society of Paediatric Gastroenterology, Hepatology and Nutrition We also delivered our National Conference and family weekend in Warwickshire with 147 family delegates and 76 children and young people taking part. The new weekend format received great feedback.

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

CLDF’s families and young people’s teams attended 74 clinics across the country, a 10% increase on the previous year 780 young people between 11 and 24 had contact with CLDF during the year, a 7% increase on the previous year The support team also had 1944 contacts with parents, friends and relatives, a 12% increase on previous year Our Liver App, launched in partnership with Coventry University, supports young people through transition from children’s to adult services and supports self-care and management CLDF held three residential events for young people; Breakaway for 12- 15 year olds, Talk, Tell, Transform Reunion project for those aged 16 + and ‘Wild Camp’ for patients aged 11+ and a parent. All received exceptional feedback It was a wonderful experience; I especially enjoyed the way it challenged my daughter and how well she did. I learnt a great deal about her that I didn’t already know.

Parent feedback from the Wild Camp

Research 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 twelve research projects ongoing.

Highlights: Projects awarded 2016: T cell epitopes for the development of biomarkers and novel therapeutics in autoimmune hepatitis type 2 (AIH-2) Professor David Wraith, Institute of Immunology and Immunotherapy University of Birmingham Global effects of maternal smoking on the human fetal liver protein profile Dr Panagiotis Filis, University of Aberdeen Two projects received funding in a jointly funded grant round with the British Society for Gastroenterology Hepatology and Nutrition (or BSPHGAN) Congenital porto-systemic shunts and the development of liver tumours Professor Richard Thompson, Kings College Hospital Association of stool microbial profile with short-term outcome in infants with biliary atresia after Kasai Portoenterostomy Dr Vandana Jain, Kings College Hospital

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: Sitting on The Lancet Commission ‘Addressing liver diseases in the UK’ The NHSBT Liver Advisory Group and British Society for Paediatric Hepatology Gastroenterology and Nutrition, representing patient interests The Hep B campaign for universal vaccination which came to fruition in the year with the announcement that all babies will be vaccinated from 2017 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

11,643

Visits to Yellow Alert Website

13,761

Fundraising highlights Our sincere thanks goes to all those individuals and organisations who so kindly supported Children’s Liver Disease Foundation in 2016.

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

18 charitable trusts kindly supported us providing £76,619 to support key projects Our monthly giving programme raised almost £49,000 in the period covered by the report. Our work with corporate partners has increased over the last nine months, many coming through links with families.

These relationships are invaluable to us Nearly 270 people took part in a sponsored activity for us including head shaves, runs and swims – a 14% increase on the same period in the previous year CLDF does not receive Government funding. We are reliant on voluntary donations. On behalf of all our inspirational young people and their families, a sincere thank you to everyone, we couldn’t do it without you.

For more information on any aspect of CLDF’s work visit childliverdisease.org Registered charity number 1067331 (England and Wales) SC044367 (Scotland)

IT’S 10 YEARS OF BIG YELLOW FRIDAY! SAVE THE DATE – FRIDAY 2ND MARCH 2018

2017 marked the 10th anniversary of Big Yellow Friday and supporters around the country marked the occasion with a host of yellow themed fundraising ideas, from cake sales to quizzes, sponsored cyclists to ‘nutty knitters’!

We were proud to welcome Sooty on board as a celebrity supporter and were delighted to see that families were keen to raise awareness as well as funds, as we witnessed a new trend for lighting up local landmarks!

Blackpool Tower, the Ashton Memorial, the Spinnaker Tower in Portsmouth and Glasgow’s Titan Crane all shone yellow on what was a gloomy, wet evening.

2017 Big Yellow Friday raised £54,896. We are so grateful to everyone who took part and plans are already in place for next year’s event. It’s Friday 2nd March 2018 so put it in your diary now. Even if you just have a cake sale, a Big Yellow sweepstake or wear yellow for the day, it’s a fun and easy way of raising much needed funds. Visit bigyellowfriday.org for more info.

Abbey Primary School join in Big Yellow Friday

A Gala night at The Dorchester March was certainly a busy month for fundraising this year as it also saw the Chefs’ Gala Dinner at The Dorchester, London; a wonderful evening which raised over £128,000 for CLDF. The dinner was designed and supervised by four of Britain’s top chefs; David McIntyre, Guillaume Katola, Jean-Philippe Blondet and Angelo Ercolane, under the direction of the Dorchester’s Executive Chef, Henry Brosi.

It was also attended by 33 chefs who shared some of their secrets of life in the country’s finest kitchens with our guests. As well as enjoying a first class menu, guests heard about the work of CLDF, the highlight of which was undoubtedly Michael’s film ‘Loving Your Disease’ which he made at Talk Tell Transform in 2016. They gave generously throughout the evening, taking part in a luxury raffle, silent auction and live auction which was hosted by Lord Archer. A huge thanks to Visa who kindly sponsored the whole evening.

“£128,000 is a fantastic amount to raise in one evening,” said Alison Taylor. “We are so grateful to Henry Brosi and his team at The Dorchester and to all the chefs who attended, many of whom also provided wonderful raffle and auction prizes, to make the Chefs’ Gala Dinner such a memorable occasion. We have had fantastic feedback from those who attended and plans are already in hand for our 2019 event!”

Final preparations for the Chefs’ Gala Dinner

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Dental care for children with liver disease

By Julie Mitchell, Consultant in Paediatric Dentistry

Whilst good dental health is a priority for any parent, for those who have children with liver disease it is a particular concern. Children may be at increased risk of tooth decay if on a high calorie (high sugar) diet. In addition children may suffer from dental problems related to their liver disease.

These include: • • • •

Tooth staining Enamel hypoplasia (poorly formed enamel) Drug induced gum overgrowth Delay in teeth coming through (erupting)

What can be done to improve the appearance of these teeth?

Whilst very little treatment can be carried out for baby teeth, a paediatric dentist can carry out a variety of treatment for adult teeth to make the staining less noticeable. This may include tooth whitening (bleaching), placing a white filling to cover the staining (composite masking) or a combination of techniques.

Tooth whitening (bleaching) This treatment uses a mild bleaching gel inside a specially made mouth guard at night time. This can be a long process and in some cases takes six months or longer.

Although the staining improves it is often not possible to completely remove it.

Tooth staining

Composite masking

Teeth forming whilst a child is unwell with liver disease can have:

In addition to tooth whitening (bleaching) a white filling material (composite) can be used to cover the remaining staining to make it less noticeable. In children and young adults porcelain veneers and crowns should be avoided as both these treatments involve removing healthy tooth tissue (enamel) to make space for the veneer or crown which significantly weakens teeth.

1. Permanent grey-green staining 2. Enamel Hypoplasia (teeth can have yellow-white patches, easily wear or sometimes be small and misshapen) The grey-green stain is permanent and is caused by biliverdin (a green pigment made when haemogloblin is broken down) being added into the forming tooth. Adult teeth begin to develop at birth, and from this time until around three years of age all the front teeth and the four back adult teeth are forming. Only the part of the tooth forming at the time a child has liver disease and jaundice will be permanently stained. Once the liver condition has been treated successfully teeth continue to develop normally without staining. These stains cannot be removed with tooth brushing.

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Sometimes in adulthood porcelain veneers or crowns are fitted to help improve the appearance of these teeth, but this is always the last treatment of choice.

When can my child have treatment carried out?

It is better to wait until most adult teeth have come through (12 years onwards) to reduce the need for repeating the treatment and to get the best results.

However if children are being bullied or are upset by the appearance of their teeth, treatment can be started earlier, provided they can cope with it.

Enamel Hypoplasia The tooth surface (enamel) can be yellow-white, patchy, easily worn and sensitive. These defects are permanent and are likely to be caused by illness temporarily upsetting the cells that form enamel (ameloblasts).

What can be done to improve the appearance of these teeth?

Very little treatment can be carried out for front baby teeth but back teeth which begin to come through around the age of 18 months should be protected to stop the surface from wearing away.

The type of treatment will depend upon how worn the teeth are and children’s ability to cope with treatment. These can vary from: • • • •

Plastic coating (fissure sealant) / glass ionomer cement (temporary sealant) White filling material (composite) and fissure sealant Stainless steel crown Extraction (if unrestorable / infected)

Adult front teeth To improve the appearance of your child’s teeth they may require either tooth whitening, a white filling to cover the affected area (composite masking) or a combination of both techniques.

Adult back teeth (first permanent molars) These teeth begin to come through around the age of six and should be protected to stop sensitivity, prevent tooth decay and wear. The type of treatment will depend upon how worn the teeth are and can vary from plastic coating, white filling material and fissure sealant, stainless steel crown as above or even a gold or cast metal onlay.

If teeth are severely worn or decayed they may need to be removed when children are around age 9-10, which allows space to be closed by other teeth still growing.

This article, together with images of many of the conditions which Julie describes, is available at childliverdisease.org/teeth

Overgrown gums (gingival overgrowth) due to medicines Some medicines can cause gums to overgrow (gingival overgrowth) in susceptible transplant patients.

What can be done to avoid this happening?

This condition is rarer now as newer medicines such as Tacrolimus and Sirolimus are less likely to cause gingival overgrowth. Good, regular tooth brushing (twice a day) and visiting the dentist for a professional clean can help reduce the risk of this happening. In severe cases the medicines may need to be changed by your child’s doctor or gum surgery (gingivectomy) carried out by a paediatric dentist or periodontist (gum specialist).

Delay in teeth coming through (erupting) Children’s teeth may take longer to come through (up to 22 months). This could be due to illness but no one really knows the true cause.

What can be done to encourage my child’s baby teeth to come through?

For baby teeth it is recommended that children are seen and monitored by a paediatric dentist. Teething rings or gently massaging gums with a tooth brush may help encourage the teeth to come through.

What can be done to encourage my child’s adult teeth to come through?

If adult teeth fail to come through your child may need dental surgery (surgical exposure) to uncover their teeth. This will require careful planning with the dental team (paediatric dentist, orthodontist and oral surgeon) and your child’s medical team.

How can I keep my child’s teeth healthy?

1. Children should brush their teeth at least twice a day (before bedtime and one other time) with fluoride toothpaste. Adults will need to help brush teeth for children less than 7 years of age 2. Try to have less sugar and only have sugary food and drink at mealtimes 3. When your child is ill try to give them only sugar-free medicines 4. Take your child to visit a dentist to have their teeth checked every 6 months

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Making your voice heard CLDF represents the views of children and young people with liver disease and their families in a variety of ways. This includes making sure our supporters voices are heard when organisations such as The National Institute for Health and Care Excellence (NICE) are developing clinical guidelines as well as influencing health policy which may have implications for children and young people with liver disease.

In January 2017, CLDF, along with a number of other organisations, co-signed a letter to the Prime Minister, voicing concerns about the extreme pressures faced by the NHS, to offer support as the Third Sector and to request that a new settlement for funding healthcare should be included in the spring budget.

Another issue of concern to CLDF is the rise in childhood obesity as it increases the risk of non-alcoholic fatty liver disease. We have long been supportive of all policies aimed at reducing childhood obesity in the UK and, in March this year, CLDF was confirmed as a member of the Obesity Health Alliance (OHA). This enables us to work with other organisations to influence government policy on childhood obesity.

CLDF is also a member of the Prescription Charges Coalition, an alliance of over 20 organisations aiming to 24

end unfair prescription charges for people with long-term medical conditions, a subject we know is a concern to many of our young adults.

CLDF is not a huge charity but by joining forces with other organisations we can achieve real results. Following years of campaigning by CLDF and other charities, it was recently announced that Hepatitis B, a highly infectious virus which can be very serious when acquired in children, will be included in the universal vaccine given to all babies.

Additionally, CLDF recently joined with Rare Disease UK to campaign for the implementation of a Rare Disease Implementation Plan in England. Whilst Scotland, Northern Ireland and Wales already had plans to implement the Rare Disease Strategy, England was left as the only UK nation without a plan for improving care for patients of rare diseases, which encompasses all childhood liver diseases. Following the campaign it was announced that NHS England will be introducing a plan in the next few months. This is a great result for all our children and young people.

CLDF is proud to be the voice of children, young people and families affected by liver disease. Do let us know the issues which are important to you and we shall keep you updated of developments on any campaigns on the website.

A day for remembering On June 10th CLDF held our service of remembrance and celebration for families and friends of those children who have sadly died and for families whose children have received liver transplants who wanted to remember their donor.

Once again the event took place in the wonderful setting of the National Memorial Arboretum in Staffordshire and we were delighted that so many families were able to join us.

there were still part of the service by sending us beautiful messages which we included on our commemorative butterflies (pictured). The Arboretum is open all year round and everyone is welcome to visit and to see the CLDF remembrance tree (number 920) planted in memory of all the children we have lost.”

Visit thenma.org and childliverdisease.org/ bereavement for bereavement services.

After a service, during which we lit candles and heard readings to celebrate those we have lost and those who have given life to others, we had a picnic, giving families the chance to meet each other and members of the CLDF team.

Alison Taylor said: “The Remembrance Service was once again a very special day of reflection and celebration and we felt privileged that so many families chose to join us for the occasion. Others who were unable to be

One of the commemorative butterflies on which families can write their own message

In loving memory Aaron Dixon

17th March 1988 – 15th December 2016

Sean Chidozie Ohadomere 13th September 2005 – 11th October 2015

Literature update CLDF’s literature update is well underway with three new medical leaflets updated and printed and many more in the pipeline.

We are working on a number of exciting new resources including a brand new young people’s literature series, a storybook about liver transplantation for children and new information regarding bereavement. All of our medical information is accredited by the Information Standard which means it is accurate, up to date and evidence based. We also ensure all of our information is reviewed by users throughout its production.

If you are interested in reviewing our information leaflets to help us ensure they are clear and easy to read please email CLDF’s Health and Research Information Manager at hrim@childliverdisease.org 25

Congratulations to all our Fantastic Fundraisers!

The Priest Family When Sylvie was diagnosed with sclerosing cholangitis last year, her parents, Sue and Mike wanted to challenge themselves and raise funds at the same time. They ran the English Half Marathon with a team of friends, raising nearly £3,000! But the fundraising didn’t stop there. The family’s story touched their friends so much that a team of 30 of Mike’s colleagues from Vaultex UK (pictured) decided to trek up Snowdon in May and raise over £3,000!

Even Sylvie made it up and down the mountain!

Zadie Bennett In memory of her two brothers Peter and Wayne, Zadie decided to take on the epic challenge of trekking the Great Wall of China. “The trip was incredible, the best experience of my life. And I’m so proud to have raised £2,600 for CLDF”, said Zadie.

The Mansell Family When Julie moved her wedding to an earlier date, she decided to keep the original venue and organise a charity night for CLDF in aid of her husband’s granddaughter, Maisie. The night was a huge success, raising over £1,200! Even Maisie (pictured) helped out with collecting on the night!

Johnny King Johnny’s world champion moustache meant a lot to him, and so shaving it off would be no easy feat.

But having spent time on a liver ward and seeing others with liver disease, Johnny was inspired to raise funds for CLDF and set himself a target of £1,000. Johnny smashed his target, and three days later, the ‘tache was gone!

Team B+ Jonathan, Matt, Graeme and David did what very few have done before and kayaked 170 miles over 9 days from one side of the country to the other, all in aid of CLDF. The team raised an outstanding total of £4,376 in memory of Mollie, Jonathan’s partner’s step-sister.

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Sandra & Amelia Ison Sandra and Amelia raised a wonderful £48 selling homemade cards and crafts at Hertfordshire County Hall. We love the bunting!

Zara Newbury-Skinner

Oliver Hewett Inspired by his six year old cousin Dylan, Oliver wanted to take on a challenge for CLDF. With the help of his friends, Adam and Bonnie, Oliver successfully fought through the pain and the tears and ran the Barcelona Marathon, raising £1,295!

Congratulations Oliver!

Though Zara is not a runner, swimmer or cyclist, she wanted to do something for CLDF in memory of her sister Samantha, who sadly passed away before she was born. So Zara gave up alcohol for one month and raised £328!

Aidan Bungey

Lendlease

Jutexpo

We were delighted to be chosen as one of the charities to benefit from the funds raised at Lendlease’s charity ball. The Mad Hatter’s themed evening was a huge success, raising £62,000 in total, with £5,000 coming to CLDF.

Following a successful partnership in 2015, Jutexpo decided to support CLDF again for a second year. The team took part in half marathons, organised bake sales, and even dressed up as Snow White for the day! Their fundraising concluded with their wonderful ‘A Great Way to Make a Difference’ ball in October, bringing their total for 2016 to an amazing £20,000. A huge thank you to all at Jutexpo for all their hard work and support.

Looking for a challenge, Aidan took to the skies in April and raised a fantastic £615! She was diagnosed with a liver condition aged 15 and wanted to show her support, so she even helped spread the word and taught some of her fellow jumpers about CLDF and what we do!

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Pickle Wars Since 2001, the Pickle Wars has become an important date in the calendar on the Isle of Wight.

When Daniel was born with a rare liver disease, his family all wanted to do something to help. So what started off as a casual rivalry between friends over onions, became a huge annual pickle competition, raising a record breaking £8,317 this year! We are so grateful to the Ashdown family for their continued support, and to the whole community who come together each year to make this event such a success.

Freddie Ison

Chloe Parry – Tough Mudder Though it took five hours to wade through 11 challenging miles of obstacle-filled mud and water, Chloe had a fantastic time last year taking part in Tough Mudder! When her close friend Stephanie sadly passed away four years ago, Chloe wanted to do something in her memory. Chloe persevered through the challenge and raised £450 along the way.

Since Freddie was diagnosed last year, his family have been very busy fundraising. His mum Hannah decided to give up alcohol in January, and embark on a ‘Dry 2017’. Meanwhile, her school organised an ‘Ambitions Day’, and Barking and Dagenham College, where Freddie’s grandma Maxine works, got involved with Big Yellow Friday. To date, over £3,000 has been raised in honour of Freddie!

The Wildcats While Team CLDF was running the marathon along the streets of London, the Wildcats, a team from Northamptonshire County Council, walked the whopping 26.2 miles around Northamptonshire’s country parks! Team member Sarah’s daughter Lily was diagnosed with biliary atresia at just three weeks, and her colleagues wanted to give something back to CLDF in return for the support she has received. The Wildcats have raised a wonderful £718 for CLDF.

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Bellerive FCJ Catholic College Olivia and Charlotte are two pupils at Bellerive FCJ Catholic College who both have a liver condition.

The school therefore decided to fundraise for CLDF throughout the spring term, and have raised a fantastic total of £450. Here are Olivia and Charlotte selling sweets!

Big Bear’s Picnic is back!

Summer in the UK might not mean blazing sunshine and soaring temperatures but it does mean the Big Bear’s Picnic is back! It’s a wonderful excuse to get family and friends together for some fun, knowing you are raising funds for a fantastic cause!

That’s just what Alison, mum to four year old Fraser, did last summer: “We decided to join in the Big Bear’s Picnic as it is a fun and different way to involve Fraser’s own friends and to raise awareness of liver disease and funds for CLDF at the same time. We ran it as an ‘open house’ and invited family and friends with children, who joined us at various points during the day. We asked for a donation for entry (including the important cakes and sandwiches needed for a picnic). People also made a small donation to ‘Guess the Teddy’s birthday’ and joined in a treasure hunt around the garden. Everyone pitched in with the food and organising so it wasn’t lots of hard work and best of all we raised £560 for CLDF!” For all you need for your own Big Bear’s Picnic go to childliverdisease.org/thebigbearspicnic

Fraser and his bear hosted a picnic last summer

The summer is here and the Big Bear’s Picnic is back! We have the paw-fect way for you to get together with your friends and family and have fun.

Visit our website and get your free fundraising pack and materials

A great way to raise funds for CLDF this summer!

Pick a date and invite your friends, family and bears along Turn your honey into money and bake some bear bites, hold your own bear hunt, or simply collect donations on the day

fundraising@childliverdisease.org | childliverdisease.org/thebigbearspicnic | 0121 212 6022

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Helping to support siblings Katherine with her brother James

As all our families know, having a child with liver disease affects everyone and the impact can often be felt acutely and in different ways by siblings. Colette, who already had two children when her daughter was born with biliary atresia, shares her story: “When Katherine was born, our daughter Hannah was five and our son James was two. Hannah had been so excited about having a new baby in the house but that wasn’t how it worked out. The baby was poorly and she needed surgery. It meant not only that the new baby didn’t come home, mummy didn’t come home either.

“I stayed in hospital in Belfast with Katherine – an hour’s drive away from home; my husband had to work and our mothers took it in turns to be at home with the other children. So we had great family support. But it was still hard for the children. When they did come to visit, it couldn’t be for long and it was difficult to explain why mummy and the baby weren’t coming home with them.

I often felt this was more upsetting for them than not seeing us at all.

“When we finally did come home, we were fortunate in that Katherine began to thrive and did not have many more long stays in hospital. As she got older, however, I noticed how her siblings reacted differently to the fact that she had a liver condition. James was extremely protective and was always reassuring her that he would look out for her. Hannah, meanwhile, wouldn’t say much but she worried a lot. Even now, illness in anyone is something which bothers her.

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“Tragically we lost James two years ago (he didn’t have a liver condition) and I can see as they get older that the two girls, now 13 and 18 are becoming closer. One thing we have always done and would recommend to any other parent is to be honest about what is going on.

Explain why mummy can’t come home right away, why their brother or sister has to be away for a while. It is hard at the time but in the long run they will learn to trust you and that will be better for all of you in the long run.”

One thing we have always done and would recommend to any other parent is to be honest about what is going on.

Hannah and Katherine today

How you can help: Ensure there are times for siblings to ask questions, talk about worries or fears Make sure parents find space to have time with siblings not in hospital

Louise Clegg Louise Clegg, Clinical Psychologist at Kings College Hospital, believes that Colette’s experience is typical...

“We know from families’ experiences and from research that it can be difficult for siblings of children who are unwell and in hospital. The research has demonstrated that the siblings of children in hospital have to cope with their routine being disrupted, and negotiate changes in family roles and responsibilities. Their reaction to this usually depends on their age, the relationship they have, and how much contact they get to have with their parents during that time.

“If it’s a short time, younger children might see their stay with friends or relatives as a bit of an adventure although they will miss their parents. It is not uncommon for them to become ‘clingy’, show more separation anxiety, become more easily angry or upset, or even go back to behaviours such as bed wetting.

“Older siblings can express huge levels of worry for the child in hospital either through words or behaviours. They may not have a full understanding of why their sibling is in hospital and exchanges such as ‘but why can’t you come home’ can place huge demands on parents. Sometimes siblings want to be able to come and visit, and can find it difficult if they are not allowed on the wards, and others want to know what they can do to help. Over long periods of time, or where the sibling is aware of the significance of their brother’s or sister’s admission, some children can find it difficult to manage anxieties and this can have a negative impact on mood or behaviour.

“For parents, it is very hard to manage that feeling of being torn between children. It is additionally difficult if there is a feeling that the ‘well’ sibling is ‘playing up’.”

If the child who has a liver condition is being encouraged to make a memory box or scrapbook about their illness journey, encourage the sibling to contribute to this, or even make their own Where possible, support the siblings to have time together, whether that’s cuddle time, talking time, speaking on the phone, or simply time to have fun Ensure there is a way for the siblings to communicate regularly be that Skype, social media, facetime, a diary Make sure the sibling has an age appropriate understanding of the illness and reason for admission. Parents can try to ‘protect’ the ‘well’ sibling however this can lead to the child developing their own (often incorrect) interpretations of the situation If appropriate, offer the opportunity for the sibling to come to appointments before an admission (e.g. at pre-transplant assessment) so they can see the hospital, understand where their sibling will be, and meet some of the team that will be looking after their brother or sister whilst they are in hospital Provide the sibling with a helping role. Make them feel involved and a part of the ‘team’ working to make their sibling better. Possible roles might be: helping to pack an admission bag, collecting ‘get well soon’ messages from the school, or be in charge of organising decoration for the hospital room

Older siblings can express huge levels of worry for the child in hospital either through words or behaviours.

Continued on page 32.

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Continued from previous page.

Reassuringly, Louise does not believe that childhood hospital stays have a long term negative effect on sibling relationships: “From my clinical experience, for siblings who are of an age to understand illness it seems that the relationship becomes stronger. Younger children who struggle to understand what is happening can display feelings of anger or jealousy towards their sibling during times of separation, but I have not heard of this continuing for long once the family are home together.

“Ensuring that siblings feel a part of what is happening, still feel safe and contained through parents, friends and family, and have space to be able to make sense of the events that are happening, will all help to minimise any negative impact.”

Do you have a story about the impact of your child’s illness on siblings? We would love to hear and share them. Please send them to families@childliverdisease.org

Dare to face your fears!

Just £25 to register

Join us on Saturday 16th September and see Birmingham like you’ve never seen it before! Abseil 170ft down the Hampton by Hilton and raise vital funds for CLDF. Get a team of your friends and family together, or come along and cheer our supporters on their way down!

Sign up at childliverdisease.org/challenges, call 0121 212 6022 or email fundraising@childliverdisease.org

Big night out and a long night in – how Eve and Tom raised money for CLDF Over the past year lots of our young people have got involved with fundraising. Here are just two of their stories: “I had won several talent shows with my drama group and so had my friend Ruby,” says 16 year old Eve, who was diagnosed with auto-immune liver disease in 2014.

“When we performed our first joint sketch in last year’s Talent Show and won, it inspired us to write more so that we could put on ‘Ruby & Eve’s Big Night Out’ as a charity fundraiser. I chose CLDF and Ruby chose Ronald McDonald House, who had supported her brother.

The evening was a collection of comedy sketches inspired by Victoria Wood’s work. It took a lot of planning but luckily we had help from our drama group teachers and our parents, who helped us sell all of the 120 tickets!

“The preparation did get a bit stressful. I was scared that my school friends wouldn’t ‘get’ the comedy and would ridicule me. But in the end it was a great success and everyone was so positive; it was a huge relief.

“I would say that the hardest part was learning all the lines (10 individual scripts and lots of characters) and the best bit was the audience reaction and the laughter!

“We were so surprised that we had raised so much money - £900 which was matched to make it £1800.

And I felt humble and proud to support a charity which has supported me.”

We were so surprised that we had raised so much money - £900 which was matched to make it £1800. And I felt humble and proud to support a charity which has supported me.

Eve (left) and Ruby on stage

Tom and Elle Tom, 21 says: “I was motivated by my girlfriend Elle, who has auto-immune liver disease. I’ve always enjoyed virtual racing and thought a sponsored Le Mans 24 hour race would be a great way of raising funds for CLDF. “Virtual racing is not like a video game - it's difficult and everyone treats one another with respect just like a normal sport. The races are broadcast and live-streamed on YouTube and get tens of thousands of watchers and there is a commentary team. Also just like real racing; each car has sponsors. We gained sponsorship from my former employer in exchange for using their logo on the car. Together with generous donations from family and friends, it meant I raised £110 for CLDF. And the satisfaction of doing that certainly helped me through the long stints of late night and early morning racing!”

Together with generous donations from family and friends, it meant I raised £110 for CLDF. And the satisfaction of doing that certainly helped me through the long stints of late night and early morning racing!

If you are a young person with a fundraising idea you would like to talk through contact us at fundraising@childliverdisease.org

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My liver disease didn’t stop me!

Keith feels lucky to be working at Westminster

Achieving your goals can be trickier when you have a liver condition. But it needn’t be impossible.

Keith, now 26, who has biliary atresia, is a researcher at the House of Commons.

“I didn’t really think about my condition too much when I was growing up” he says.” Yes I couldn’t play contact sports, but I could play other sports and go out and socialise too. People were curious about my condition, particularly my scar, which I used to tell people was a shark bite before finally admitting the truth, but I was always open and honest about my condition if asked and I think people respected that. I’ve had a couple of bad episodes in recent years and perhaps I do tire more easily now but that’s just life. There are many people much worse off than me.

“I’ve always had an interest in politics. When I was in high school I started reading and learning more about it and it eventually became my best subject at school. I was thrilled to be able to study politics at University, both at undergraduate and postgraduate level.

“My liver condition was certainly a factor in my choice of

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University. I only applied to those in Scotland so I could be close to my family and specialists. I attended the University of Dundee which was actually the closest to home, but it was also a brilliant student experience. Yes I did feel different from my peers - but in a good way. I was always invited to the next big social event - actually, I organised a lot of them myself! My friends always liked the fact that I would go out and enjoy myself, particularly when there was alcohol involved as I don’t drink. I found that extremely humbling that they just enjoyed my company – and still do!

Yes I did feel different from my peers - but in a good way. I was always invited to the next big social event actually, I organised a lot of them myself!

“After I graduated, however, I was keen to study abroad and was stunned when I was accepted into the University of Amsterdam. Every six months I would take the 60 minute flight back to Scotland to receive my bi-annual check-up and the doctors in Edinburgh were always interested in hearing about life abroad.

“The deeper in my studies I got, I realised I wanted to do a job that would help correct injustices in the world. I had great experiences working at a couple of charities, before landing my current role as researcher for Stewart McDonald MP - something I always wanted to do, but never imagined would happen so early in my career.

“I know I’m lucky to be doing a job I enjoy so much. It’s amazing to be part of one the greatest cities in the world and sometimes it is still hard to comprehend that the Palace of Westminster is my place of work.

“Even if you have a long term health condition, you can

still set yourself ambitious targets and meet them. I think my liver disease may even have affected my choice of career, as I’ve always seen healthcare as a basic human right and thought those who don’t have access to it are facing an injustice, which was my main motivation for wanting to work in politics. Whether you have biliary atresia or another form of liver disease, it does not define you, but it can help shape who you become.”

Are you (or do you know) a young adult living and working with a liver condition? We would love to know what you are up to. Please email your story to communications@childliverdisesae.org

Instant support from new app ‘My Liver’ is the new app developed by CLDF in conjunction with a specialist research team at Coventry University. Designed to help young people with their transition from paediatric to adult services, it contains a wealth of information, contact details and even a reminder feature for taking medication and hospital appointments.

Since its launch in December 2016, the app has been downloaded 321 times with the most popular page being Hive (see page 11) showing that young people are using it as a quick and easy way to connect with each other.

“I have really benefited from using the app” says 18 year old Manhattan who has primary sclerosing cholangitis.

My favourite part is the information on the different liver conditions, which has allowed me to understand them much better, especially when it comes to medication.”

The app is available to download free from the App Store or Google Play, depending on your phone.

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