Issue 03/Autumn 2016 01
Cover: The Hunter Hall family at CLDF’s Scotland Family Weekend at Crieff Hydro Hotel Left to right: Janine, Ishbel, Rosina and Ed
You may notice that we have not included a Christmas card catalogue in this issue. This is because we are changing our Christmas fundraising this year and details of our new campaign can be found later in the magazine. In a challenging fundraising environment your support means more to us than ever. We are continually humbled by the amazing efforts which our fundraisers go to each month to support us. We are currently looking to develop more partnerships with charities to improve our efficiency and with businesses to increase our ability to raise funds and awareness. If you feel that you can help us to reach out and access new opportunities this is more important than ever and we would love you to get in touch. We are continually humbled by the amazing efforts which our fundraisers go to.
Welcome to the autumn edition of Liver Life Our summer has been one filled with activities. On CLDF Breakaway our 12-15 year olds had fun with woodland challenges and an aerial adventure course, while families who came on Wild Camp made new friends around the campfire. In July I enjoyed a trip to the Transplant Games in Liverpool and it was great to see so many of our young people taking part. In September we held our inaugural National Conference and Family Weekend in Warwickshire, which gave families the chance to meet and chat with others after hearing from experts on a wide range of liver disease topics. We would like to say a huge thank you to all the medical professionals, young people and volunteers who made the Conference such a roaring success. We hope that everyone enjoyed the new weekend format. 02
It’s incredibly important to us that you receive our information in the best way for you. We are able to send Liver Life by email, so if you would prefer to receive information from us digitally please do let us know – it’s the same information and CLDF can spend less on postage. Just send an email to email@example.com I hope to see you at one of our family events later this year or in 2017 and wish you a peaceful Christmas and New Year.
Alison Taylor Chief Executive firstname.lastname@example.org P.S. As you may know, we have been lobbying for the inclusion of Hepatitis B in the childhood vaccination programme. At time of going to press we are waiting with bated breath for good news from Westminster. For the latest on this issue go to childliverdisease.org/hepatitis
contents 04 Transplant games 2016
Transplant games 2016
Always just a click away
Didnâ€™t they do well!
Itâ€™s our Big Yellow Birthday!
Join in the fun with CLDF
Passionate about what we do?
Just be yourself
Come film-making with CLDF
First weekend conference
Get recognised for volunteering
CLDF Impact Report 2015-16
CLDF broadcasts to the nation!
13 CLDF Impact Report 2015-16
10 Join in the fun with CLDF
19 Your CLDF needs you
Back to school
How to develop resilience
A new standard for all literature
Your CLDF needs you
Life after liver transplant
Get protected this winter
Remember someone special
In loving memory
Learning how to help yourself
Give a gift, change a life
Dates for your diary
22 Fantastic fundraisers!
Transplant Games 2016
Competitors from Birmingham Children’s Team with their medals
From the colourful Opening Ceremony to the closing celebrations, Liverpool wholeheartedly embraced the 2016 Transplant Games. Across three days transplant recipients of all ages from children to the more experienced took part in a plethora of activities throughout the city. The three teams with paediatric liver members – Leeds, Birmingham and a fantastically expanded King’s team – were in high spirits throughout the week. No matter how many medals were won, it was clear that all the children and families gained a huge amount
Always just a click away You don’t have to wait for a CLDF event to contact other people affected by childhood liver disease. We are just a click away from your sofa or hospital bed. CLDF Hive is our social network for 11-25 year olds which now has over 180 members from throughout the UK. There are regular blogs to read, hosted live chats for people to break the ice, and ways to find people who share the same condition or hospital as you. If you’re not sure who to say hello to, our Hive Ambassadors are volunteers aged 16+ who are there to welcome you to the site. To access Hive through a mobile app, just download Cometchat from your phone or tablet’s app store. To set up an account, go to cldfhive.co.uk Health Unlocked is our online community for over 850 parents and carers who share top tips and support each other on their liver disease journey. We have just updated the information on there to make it a more valuable resource. Visit healthunlocked.com/cldf 04
Leeds Children’s Team in the opening parade through their involvement with Transplant Sport. We are very proud to sponsor the Games and to take part in the celebration of transplantation and organ donation with them. CLDF are already looking forward to experiencing the Games in Lanarkshire in 2017 and in our head office home of Birmingham in 2018. We have a very strong relationship with the Transplant Sport charity and it was a pleasure to also welcome them to our National Conference in September.
Didn’t they do well? We know our young people are amazing but even we are constantly surprised by some of their achievements. Here is a round-up of what’s been happening over the past six months. Charlie’s cracking cake sale
Nine year old Charlie was only diagnosed with autoimmune liver disease last year but quickly decided he want to raise funds for CLDF: “I wanted to raise £100 to help other children that have liver disease like me,” explains Charlie. “And I decided on a cake sale because everyone loves cake!” Charlie’s cake sale smashed all expectations, raising an incredible £1,500 but he’s not stopping there. “I want to sell my old toys to help raise even more money. I think us liver disease kids deserve it!” he says. Mum, Laura, is very proud of how Charlie has come to terms with his diagnosis “From a boy that had never swallowed a tablet in his life or had a blood test, to having numerous tablets a day and bloods every week, he truly is a star,” she says.
Mollie’s skating success
Dennis bounces back
“It was during a family trip to Coventry ice rink that one of the coaches spotted her and suggested she take up lessons,” explains mum Claire. “Mollie-J has always been shy but skating is something she really enjoys and it has boosted her confidence. She now goes four times a week and loves it. I would never have dreamt that she could do something like this. We are very proud parents.”
“Dennis is always full of energy,” says mum, Jo. “Despite dealing both with biliary atresia and cerebral palsy he maintains a positive attitude and is always on the go. He couldn’t wait to get back to school and in no time at all was back swimming, playing in the mud and he even took part in his school sports day. There is no holding him back now.”
Ten year old Mollie-J came second in the Coventry Figure Skating competition in June, just two years after taking up ice-skating!
Eight year old Dennis, who had his liver transplant in May, couldn’t wait to get going again and was back at school just four weeks later!
Cole shows courage
No-one likes having blood tests but two year old Cole is determined not to make a fuss. “For about a year now Cole has not made one sound or flinch at blood tests,” says mum Elizabeth. “He sits still and watches them as they do it, no fuss, no tears. None of his friends or cousins would sit still and allow doctors to take hordes of blood. I’m proud of him in many ways but I just think this is amazing for his age.”
Millie keeps on dancing
Eight year old Millie came fourth in a regional street dancing competition and got through to the semifinals of the World Championship in August. “She did this just nine months after having a major GI bleed,” says mum Nikola. “We are so proud of her determination.”
Six year old Peyton (left), who loves her swimming lessons, has gained her 25 metre swimming badge. And six year old Kody has received his Level 2 Octopus swimming certificate. Mum Megan says “He shouted from across the swimming pool, ‘I did it mummy!’ I could have burst with pride.”
Tiffany keeps smiling
Kerri copes brilliantly
“She had an awful start and went through such a horrible time but since her transplant when she was seven months old she has gone from strength to strength and is now doing amazingly. I'd just like to nominate her for never ever losing her beautiful smile and her cheeky nature.”
“Kerri was 10 when she was diagnosed with auto-immune liver disease and I remember her journey so well. She is 24 now, doing well with her medication, goes to her appointments on her own and has so much more confidence. I am so proud of how she handles her condition.”
Dee has nominated her 18 month old daughter, Tiffany.
Maureen’s daughter Kerri is grown up now but her mum is just as proud:
Eve wins musical scholarship
Eleven year old Eve who plays clarinet, viola and bassoon has gained a Beckwith music scholarship to The Malcolm Arnold Academy in Northampton. Eve is also a member of the Northamptonshire County Junior orchestra and Northamptonshire County Choir and performs at various venues around the country.
Gymnastic gold medals from Amelia
Eight year old Amelia loves gymnastics and regularly competes at county level. Here she is after winning three gold medals, one bronze and the trophy for overall winner in her age group, her second competition win in as many months!
As well as organising a wear yellow day and cake sale, nine year old Freya (pictured first left) wrote a presentation about the work of CLDF which she then delivered to her whole school – 300 pupils and their teachers. They clearly liked what she had to say – she raised £217 on the day and another £740 from a tea party at home. When nine year old Sophie (right) persuaded her school to do fundraising for CLDF she spoke to her whole school about what it is like to live with a liver condition. Her words were clearly well received too. To date she has raised an amazing £2,500!
Flying start for Flo
Flo is delighted to report that she has passed her first year of university exams with a First! “There’s a huge weight off my shoulders and now I can look forward to backpacking around Europe!” she says.
Ashden’s snap happy
Six year old Ashden was Chief Photographer and news reporter when his school took part in the BBC’s School Report project.
Research news CLDF is currently funding six research projects and has awarded another PhD. We’re committed to funding cutting edge research into paediatric liver disease and ensuring that our funds have the biggest impact possible. We have a number of programmes which fund research and small projects across the UK. We have a brand new programme we are delighted to tell you about along with information regarding some of the exciting projects we’re currently funding.
BSPGHAN/CLDF Start-up Research Grants 2016 CLDF and The British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) have joined together to offer two start up research grants in 2016. All applications for the 2016 round of grants have now been received and the process of selecting applications to provide funding to has begun. Proposals will be reviewed by a panel made up of members of CLDF’s Scientific Committee and the Joint BSPGHAN/NIHR-Children Research Working Group. The aim of the grants is to fund initial research into the causes of liver disease, improving the diagnosis and management of liver conditions and longer term outcomes which will go on to contribute to even larger studies within the area. Two grants will be awarded by November 2016, each for up to a maximum of £10,000. One grant is specifically for research into biliary atresia and the other grant can be used for any aspect of paediatric liver disease. The changes suggested by parents will strengthen the research study. 08
Small grants We have a small grants programme which is designed to fund smaller projects. These vary from research taking part in the lab to funding focus groups and patient involvement. We funded a patient involvement session in February 2016 held by Dr Dalia Belsha. Dr Belsha applied for a grant in order to obtain feedback from parents on the design of a research study exploring portal hypertension in children. Dr Belsha had not yet applied for funding to carry out the project and prior to doing this wanted to obtain feedback on the research from parents. The study aims to produce a scoring model for children who suffer from bleeding from varices (abnormal, dilated blood vessels in the gastrointestinal tract) so clinicians can tell how serious their condition is. Dr Belsha held a focus group at CLDF’s office and invited the parents of children with liver disease to attend. Seven parents attended the focus group and learned more about the research before offering a unique, parent’s perspective on the content of the research and how the research is carried out. The event was a success and provided Dr Belsha with some really useful insights. The changes suggested by the parents will strengthen the research study and make it more likely to be successful in receiving funding from large organisations.
Student fellowship update CLDF has recently awarded a PhD Student Fellowship to a team led by Dr Jill Barber and Professor Amin Rostami at the University of Manchester. Martyn Howard, the PhD student who has recently been appointed, will work on a project exploring how medications act in children’s livers including those with a liver disease. Livers vary from person to person and these differences can affect how much of a drug a child should be given. Size of liver is one important variation and another is the level of different enzymes in the liver. The enzymes help different reactions take place in the liver including the breakdown of medications. The research team have developed a way to measure the level of enzymes in livers. They will be looking at livers from children with and without liver disease and comparing the levels of a number of different enzymes. This information will feed into a model which will help doctors prescribing medicines to children with liver disease to prescribe the most suitable dose. You can find out more about PhD awards made on our website here childliverdisease.org/phd
The research team at Manchester University who were awarded a CLDF PhD student fellowship this year
IT’S OUR BIG YELLOW BIRTHDAY! Our national fundraising day is turning ten and we want you to help us celebrate! Friday 3rd March 2017 is your chance to show your support for CLDF and children and families affected by joining the fun, joining the fight on Big Yellow Friday.
FRIDAY 3RD MARCH 2017
Over the last ten years, we’ve seen thousands of people organise everything from cake sales, to comedy nights, fancy dress days to football tournaments, raising an incredible £661,484! Thanks to your support, we’ve been able to offer and develop vital, lifechanging services. But we know that there’s so much more we need to do. So on our 10th birthday, we want to go bigger and yellower than we ever have before! Whether you’ve been with us from the start or have never joined in before, get your party hats at the ready, add the date to the diary and start planning your event. To find out more visit bigyellowfriday.org 09
Join in the fun with CLDF A varied events programme this year has given families, children and young people the opportunity to meet others, share experiences, have fun and create friendships. From science days to picnics and exploring the great outdoors at Wild Camp and Breakaway, we have something to suit all tastes. Go to childliverdisease. org/familyevents to find out when we are coming to a place near you! “I just wanted to let you know that I feel very grateful to have been a part of the family fun day on Saturday; it made a lovely change and really made my confidence come out. I haven't felt so happy, confident and all round that good in myself for very long time, most probably around the time I was in primary school! I was nervous at the beginning but after 10 minutes I felt like I was in the right place doing the right thing and not even having to think much of what I was doing it just felt like it came naturally, I would love to attend any other events you have.” Young adult with a liver condition.
CLDF events give families a chance to have fun together
Passionate about what we do? Are you passionate about what we do but not sure how to help? Making a regular monthly donation is not only an easy way to support us, but is also a fantastic way to make a difference to those affected by childhood liver disease today and in years to come. “When my son Elijah was diagnosed with biliary atresia, our family was devastated. The future was suddenly so uncertain. CLDF provided invaluable support and hope. We have used them to develop a network of families going through the similar experiences. I know that we have been able to cope with Elijah's diagnosis far better because of CLDF and for that I am eternally grateful.” Lisa, parent. By setting up a regular gift you can help CLDF to help children like Elijah and his family. A monthly donation provides us with a stable and predictable income, meaning we can plan our events, projects and services more efficiently.
A regular gift helps families like Elijah’s
Set up your regular gift today at childliverdisease.org/regulargiving or call the fundraising team on 0121 212 6022
Just be yourself Emma is pictured with her mum, dad and Eric Morecambe!
Emma, who has just begun her second year studying Criminology at Lancaster University, describes her feelings as she embarked on university life. Attending university was something that I always had mixed feelings about. I was a bit excited but mostly very anxious. I had all the common worries – enjoying the course and making new friends – plus extra ones – handling medication, drinking and becoming unwell – things that really scared me. I told myself that I wouldn’t be able to cope alone. But before leaving, my family and I had many discussions about how I would best manage my medication and what I would do if things did go wrong. My family still help me now. I soon learnt that moving to university didn’t necessarily mean being alone, it meant being independent.
Being open with your friends is one of the best things you can do. I admit there were tears on my first day. I was dreading Freshers’ Week because I thought this would be the time that I stood out from the crowd, the one who didn’t
drink. In reality I was surprised to find that not many of the people I met were really heavy drinkers. I feared that telling my flatmates something so personal and ‘deep’ so soon after meeting them but after a long chat with one of the girls on my flat, I decided to explain why I didn’t really drink much and why I took medication. I felt so relieved that it wasn’t made a big deal out of. It was simply just accepted. Admittedly, I have forgotten a couple of my medications as I got caught up in university life. Although I do get annoyed with myself for this, I consider it a huge learning curve. And to this day, I am still learning. Every day brings something new. One thing I would say to someone who is moving to university with a liver condition is that being open with your friends is one of the best things you can do. I had always struggled with the fact that none of my friends really understood my condition but I have now realised, however, that people don’t need to know every detail to be a good friend. Good friends are people who support you continuously and accept the things make you, you. In the end, I found that the best thing which equipped me, both for university and growing up in general, was experience. Feeling overwhelmed at the prospect of university or anything new in life, is normal. But living with a liver condition is a unique experience and that is what makes it special. 11
Come film-making with CLDF Liver disease can be an isolating experience for young adults, but it doesn’t have to be. Talk Tell Transform is CLDF’s digital storytelling project. Running from Monday 20th to Friday 24th February 2017, we’re looking for 16-18 year olds to take part in this film-making residential, now in its 6th year. If you or someone you know could benefit from sharing their story, meeting others, and being part of something really special, please contact our Young People’s Team email@example.com “TTT helped me a lot through my journey. Before this I didn’t know anyone else with a liver condition, now I know 11 more people and counting. It’s nice to know there are people in the same situation as you, you’re not alone and can share stories” Manhattan, 17.
First weekend conference for CLDF
Chesford Grange was the new venue for this year’s conference
CLDF’s National Conference took place on September 24th and 25th at Chesford Grange near Kenilworth. For the first time ever the National Conference was extended to a full weekend event with many families staying overnight at the venue. Parents learned about the latest developments in research related to childhood liver diseases and met paediatric liver specialists from a number of centres around the country, whilst their children enjoyed a trip to nearby Drayton Manor Park.
Manhattan enjoyed his Talk Tell Transform experience
It was lovely to see families who have been at previous CLDF events and to meet some new faces. To find out more about the weekend and to see pictures please visit childliverdisease.org/conference
Get recognised for volunteering Volunteering is a key part of any charity’s work, and CLDF is no exception. Over the last year our Young People’s Team has seen a huge rise in the number of young liver patients volunteering for us, and we’re always looking for ways to show our appreciation. vInspired Awards are one way we do this. Recognised nationally by employers and colleges, they accredit volunteers aged 14-25 based on the number of hours they give, so whether you give 10 hours or 100 hours, there is recognition up for grabs. Most excitingly, we recently awarded Joey Grigg-King with the vInspired 100 hours Award. Joey has been volunteering with CLDF since 2012, before and after transplant. His enthusiasm and helpfulness have made life at the office all the more fun. Thanks, Joey! We’d also like to congratulate Zainab Seedat, Stephanie 12
Joey is delighted to receive his vInspired 100 hours award from Rich! Arch, and Emma Pease, who also achieved vInspired awards recently. If you’d like your CLDF volunteering recognised by a vInspired certificate, please contact our Young People’s Team firstname.lastname@example.org
2015-16 Impact Report Making a difference, together Children’s Liver Disease Foundation exists solely to support the needs of all those affected by a childhood liver disease. For CLDF collaboration is everything – by listening to and working with our supporters, networks of healthcare professionals, young people and their families we can make a difference, together.
A year of challenges and triumphs 2015-2016 has seen the organisation continue to develop in the midst of increased financial pressures. New family events, strengthened partnerships and using digital technology in the way we deliver our programmes will help us to increase our reach. We know that what we do matters and with the support of our staff, families, young people and partners, we’ll ensure we are there for families when they need us most. Alison Taylor, Chief Executive
Funding CLDF’s work
01 April 2015 – 31 March 2016 Unrestricted voluntary income
Restricted voluntary income
Big Yellow Friday
Sale of purchased goods
Fundraising and publicity
Fundraising trading goods
Education and awareness
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 CLDF leaflets distributed inc. downloads
24% increase on previous year
Unique visitors to childliverdisease.org
48% increase on previous year
Number of visits to all CLDF websites
40% increase on previous year
Number of pieces of media coverage
Spreading the word to medical professionals is an essential element of our work. During the year we attended a wide range of conferences. Receiving CLDF’s leaflets made me feel a lot more confident, like I was in control of my condition. They were so helpful – not just for me but for my friends and family as well. Young person
Support highlights CLDF’s families and young people’s teams have continued to increase their presence in hospitals attending 96 clinics across the country – a 35% increase on 2014-2015 943 young people between 11 and 24 had contact/support from CLDF during the year – an 18% increase on the previous year The support team also had 2978 contacts with parents, friends and relatives During the year CLDF launched HIVE – a specially commissioned, secure social media platform for young people to connect with each other and receive support In 2015-2016 we introduced two new residential weekends in Northern Ireland and Scotland, which were very positively received CLDF held four residential events for young people. All received exceptional feedback from participants and their parents/carers Thank you so much for helping me and my family. To think how much of a hard time we had at the start of our little girl’s life and to come out of that knowing we met such beautiful and helpful people like yourselves is a credit to you all. Parent
Research highlights CLDF currently has nine research projects ongoing in 2015-2016 CLDF and finalised the award of a three-year PhD Fellowship: Optimising drug regimens in paediatric liver disease using experimentally-derived simulation tools Professor Rostami-Hodjegan, Manchester Pharmacy School University of Manchester The following projects were funded under CLDF’s Small Grants Scheme: In vitro model for the study of tight junction protein 2 deficiency Dr Melissa Sambrotta, Institute of Liver Studies, King’s College Hospital Public and Patient involvement for study into the recognition and response to children with GI bleeding at high risk and needing endoscopic intervention Dr Dalia Belsha, Leeds General Infirmary A prediction score of oesophageal varices incorporating spleen stiffness Dr Tassos Grammatikopoulos, King’s College Hospital Bilibaby: an ongoing project to develop a screening test to be able to detect bilirubin in stool to screen for childhood liver diseases Professor Alastair Sutcliffe, Institute of Child Health, University College London
Voice highlights CLDF’s Chief Executive Alison Taylor has consulted with and represented patients and families on a range of projects. These include: The Lancet Commission ‘Addressing liver diseases in the UK’; The NHSBT Liver Advisory Group and representing patient interests at BSPGHAN The Hep B campaign for universal vaccination continues to be a priority, alongside increasing consent rates for organ donation. Both campaigns have been ongoing 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 downloads
Visits to Yellow Alert Website
* a 23% increase on 2014-15 In 2015-2016 CLDF launched a Yellow Alert app for professionals. With help from a number of organisations, including the Community Practitioners and Health Visitors Association, Royal College of Midwives, the British Association for Community Child Health and The Royal College of Paediatrics and Child Health, over 1,000 apps were downloaded. This App will be very helpful to health visitors allowing them to use it to instantly check signs and symptoms when with a baby and to ensure prompt referral on if necessary ensuring early case finding. Dr Cheryll Adams, Executive Director at the Institute of Health Visiting
Fundraising highlights Our sincere thanks goes to all those individuals and organisations who supported Children’s Liver Disease Foundation. We simply couldn’t do what we do without you. 45 charitable trusts kindly supported us helping to fund key projects including clinic visits, family events and Young People’s residentials Our monthly giving programme raised over £61,000 – a gift of just £5 a month helps us transform lives We had many wonderful corporate partnerships including Jutexpo, who raised an incredible £20,000 Over 250 people took part in a sponsored activity for us including head shaves, runs and swims For more information on any aspect of CLDF’s work visit childliverdisease.org Registered charity number 1067331 (England and Wales) SC044367 (Scotland)
CLDF broadcasts to the nation! Over August Bank Holiday weekend, CLDF was the subject of the BBC Radio 4 Appeal. As well as a fantastic fundraising activity, it enabled us to raise awareness of CLDF amongst the station’s 1.8 million listeners. Louise, who is mum to seven year old twins – Sophie, who has biliary atresia, and Megan – kindly agreed to tell her story and be the voice of our appeal. This was no mean feat – the appeal producers gave us exactly two minutes and thirty seconds to say everything we wanted to about CLDF and tell people how they could donate – but we were happy to accept the challenge! Louise says that recording the appeal at Broadcasting House was an experience to remember. “I am really passionate about raising awareness of childhood liver disease. I want every new parent to be aware of the signs and this was a great opportunity to do so. It’s exciting to think that people who knew nothing about liver disease in children or CLDF will now know a little bit more!” Louise records the appeal at BBC Broadcasting House in London
For the latest update and to listen again to the Radio 4 Appeal go to childliverdisease.org/bbcradio4
Back to school Could you get your school to support CLDF? It’s a great way of building understanding and awareness of childhood liver disease as well as raising much-needed funds. Val was delighted when her daughter, Abigail’s school made CLDF their charity of the year. “They began with Big Yellow Friday” she says. “It was incredible to see everyone dressed in yellow supporting CLDF that day and very emotional. They also held a nonuniform day and finally held a fun run. This was amazing – Abigail managed to join in and completed 12 laps of the field! The whole year has been a fantastic experience and a pleasure to have raised a huge amount of awareness and money for such a brilliant charity." How to get your school involved… • • • •
Put CLDF forward as their charity of the year Offer to do a talk about childhood liver disease (we can help!) Get involved in our Big Gift Christmas Appeal Join in with Big Yellow Friday
Val is pictured with Abigail (left), her mum, Carol and son George We’re here to help. Visit childliverdisease.org/ fundraising for more ideas and materials or email email@example.com to order your free schools fundraising pack.
How to develop resilience Kirstin McIlvaney, mum to five year old Erin, shares her tips on how to develop resilience in your child.
When a friend commented that we must be resilient to have all coped with the traumas of Erin’s first year, it got me thinking about resilience and how we could strengthen this in Erin.
When Erin was first diagnosed with biliary atresia, it made me re-evaluate what I really wanted for her in life and I realised my dreams were very simple:
A little googling and a parenting course gave me further insight.
I wanted her to be alive. I wanted her to be happy. After a rocky first year and a lifesaving liver transplant when she was six months old, my first dream was holding up well thanks to the amazing staff at LGI and a hero organ donor. So to dream number two – Erin will have to deal with a lot of medical management and there are no guarantees as to what her future will bring. How can we help her to cope with this and still be happy?
Resilience is someone’s ability to ‘bounce back’ from what life throws at them. Children who are resilient will be able to flourish in life, despite difficult circumstances and be happier. They will also be less likely to develop emotional problems like depression or anxiety. The good news is this that all children can become more resilient. I can’t protect Erin from the challenges that may come her way but I can help her become more able to cope with them.
Here are some of the things we are trying to help build resilience: Honesty!
Never lie about medical procedures. I’ll say ‘Yes this blood test will hurt, I know you don’t want to have it, I wish you didn’t need it too but it will be over very soon and it is important we know how your body is working’.
Erin has her say on how bloods are taken. She chooses no cold spray, no numbing cream and no plasters and I encourage her to tell the medical staff these rules herself.
It’s ok to be upset. When she is having blood taken she can shout and cry as much as she needs to but she has to try to sit still or it will take much longer.
Praise, praise and more praise!
I am still uncomfortable using the term ‘brave’ as it implies she isn’t allowed to show any negative feelings. Instead, if she has sat really still for an unpleasant procedure, I tell her how proud I am, and how she helped the doctors to help her.
We speak of people’s kind and generous acts highly... Kirstin has been helping to develop Erin’s resilience 18
... Much more than anyone’s physical appearance or academic/sporting achievements. We are trying to show everyone is worthwhile and everyone has something to give.
Talking about fears
When she is worried about something we talk about what is worrying her and what would happen if the fear came true. Just talking through worst case scenarios can often banish worries and help children feel they have control.
We talk about her strengths...
... And how some people have a knack for some things but not others. Encouraging her to recognise other people strengths and praise them for it is helping her grow into a kind and caring child.
The McIlvaney family at the Transplant Games
It’s hard when they talk nonstop all the time! But I know when I show I am listening, it is helping develop her sense of self-worth. For more tips and information I found this a useful resource handsonscotland.co.uk
A new standard for all literature CLDF’s information resources are accredited by the Information Standard. This means the processes we follow to produce and review information have been assessed to be rigorous. As an Information Standard accredited organisation we are committed to ensuring that all the information we provide is accurate, up to date and easy to understand. We are in the process of updating all of our information resources and as we do you will see the Information Standard logo on all resources which comply with the Information Standard.
All CLDF’s information resources are currently being updated We’re also working on giving our leaflets a facelift with a new, exciting design and you’ll be seeing our leaflets updating to the new design over the coming months.
Your CLDF needs you! We are building up our army of volunteers including people like Linda, a retired teacher who says: “My previous experience lends itself well to delivering presentations to children which will hopefully raise awareness as well as more funds. I have already been to two schools where children have held sponsored events following the presentations.”
Linda, with her granddaughter, Alesha
Could you spare a little time to take Yellow Alert posters to GP surgeries, accept a cheque on behalf of CLDF or maybe give a talk about our work at a school? If so we want to hear from you!
We don’t need a big time commitment. We may only call on you once or twice a year but the more volunteers we have the more we can spread the word about what we do! If you think you could help us please email firstname.lastname@example.org
Life after liver transplant This is the second article of the Liver Life series focusing on liver transplant featuring frequently asked questions about what life will be like after a liver transplant. What are the long term survival rates after liver transplantation?
The good news is survival rates are very high and are constantly improving. The five year survival rate is 90% and the survival rate at 15 to 20 years is 75% with a good quality of life.
Will a liver transplant solve all of my child’s medical issues? Unfortunately whilst a liver transplant is an option to treat liver disease it is not a cure. It can offer a child a real improvement in their quality of life for many years but it is a serious procedure which comes with many of its own issues. Your child will require medication for the rest of their life and will need to be monitored. However, it’s important to remember there are many adults who were transplanted as children who are now healthy and living full, active lives.
What can be done to reduce the risk of infection in a transplanted child?
Immediately after transplant medication is given to prevent infection. These medicines include antibiotics and anti-fungal medication. In the long term it is important to take sensible and practical precautions. These include: Keeping a good level of hygiene generally
Ensure wounds are thoroughly cleaned and covered
Wash hands after touching or feeding animals
Avoid new household pets for at least three months after transplant
How long will the liver last?
That’s really difficult to answer as it can vary hugely from person to person. Livers have been known to last for more than 30 years and techniques and medications are constantly improving.
What are the risks of taking immunosuppression post-transplant?
One of the main risks of immunosuppression is the increased likelihood of acquiring an infection. Immunosuppressants are essential post-transplant because they dampen a child’s immune response to prevent rejection of the new liver. They also reduce the response of the immune system to infections. This means that those who have had a liver transplant are more likely to get viral infections such as cytomegalovirus (CMV), Epstein Barr Virus (EBV) which is also known as glandular fever, Varicella Zoster which causes chickenpox and shingles, Herpes simplex which causes cold sores and measles. There are also bacterial infections which are more likely including wound infections, tonsillitis and TB and fungal infections such as thrush (candida). Patients are not more likely to get these infections – they need prompt medical attention should they develop any of the above. Patients also need to seek medical advice if they have a direct contact with anyone who has confirmed chickenpox, shingles, cold sores, measles or TB.
Avoid contact with litter trays and soiled areas
Ask the staff at the child’s nursery, school or college to inform you if there are any big outbreaks of infections such as chickenpox, diarrhoea and vomiting bugs. In particular if it is in your child’s class or peer group whom they mix with regularly
Avoid shellfish and unpasteurised milk and cheese
Brush teeth twice a day and have regular, six monthly dental checks
It’s really important to keep a sense of balance. It can be hard to know what is or isn’t an infection risk so it’s important for parents to talk to their healthcare team about any worries they have. There are very few reasons to stop your child attending school because other children are unwell. Children are given transplants so they can live a full life and this includes taking part in as many activities as possible and joining in with their friends and classmates.
Are there any foods which should be avoided after a liver transplant?
No grapefruit, pomegranate, soft unpasteurised cheese, shellfish, unpasteurised milk, uncooked/undercooked eggs. Grapefruit and its juice should be avoided as it can affect immunosuppression.
Livers have been known to last for more than 30 years and medications are constantly improving.
When is it safe to go on holiday/travel after liver transplantation?
It is generally possible to travel six months after transplantation with normal precautions and the advice of your healthcare team. It is advisable to avoid areas with acute outbreaks of disease or areas which have a risk of life threatening infections which can’t be prevented e.g. areas with Yellow Fever. It is important that you carry information about your child’s liver condition, medications and contact details for their transplant centre. When travelling abroad keep your child’s medicines in their hand luggage and take a few weeks’ extra in case you get stuck abroad i.e. a flight cancellation.
Looking to the future, will my child be able to have children when they are older following a transplant?
Many women have successful pregnancies following a liver transplant. It’s important that when women are planning families they discuss this with their medical team who can provide advice about contraception, the timing of pregnancy and immunosuppression during pregnancy. Overall, the risk is low and the rates of acute rejection and eventual loss of the transplanted liver are similar to the risks for non-pregnant transplantees.
My child is struggling after their transplant and could benefit from talking to someone. What should I do? There are a number of options. You can speak to your healthcare team about getting your child referred to a psychologist who can provide specialist support to your child and the family.
CLDF offer support to families and young people. There are a number of events around the country for the whole family where you can meet other families in a similar position. If your child is 11 years old or above then get in touch with our Young Person’s Officer, Rich. He’ll be able to talk to you about the variety of services we have for young people. He can be contacted at email@example.com or on 0121 212 6007
Children are given transplants so they can live a full life and this includes taking part in as many activities as possible.
Liver transplantation does also not affect men’s ability to have children. 21
Well done to our fantastic fundraisers! Aadam’s Story
Safi Laher has been tirelessly fundraising in memory of her nephew Aadam who sadly passed away in December 2015. Since then she has raised over £3,200 for CLDF for other families who are affected by childhood liver disease in the hope that one day there will be a cure. We have been so touched by Aadam’s story and would like to thank Safi, her friends and family for their kind and continued support.
Crawford Pharmacy Westcliffe High School for Girls
Staff and pupils at Westcliffe High School threw themselves into fundraising during their Charities Week and spent months organising everything from ‘readathons’ to fashion shows. But their hard work paid off, and they raised an amazing £4,100 for CLDF.
Staff at Crawford Pharmacy had a busy day when they decided to do some fundraising. With the help of Margaret and her daughter Tara, they raised £170 by raffling off a yummy chocolate hamper.
The White Horse Warriors
Earlier this year Faith and friends decided to take on not one, but two challenges in honour of their daughter, Coco, who has alpha-1 antitrypsin deficiency. They cycled and paddleboarded their way to success, raising an incredible £4,245 towards our vital work.
They’ve been cold, they’ve been muddy, and they’ve even been electrocuted! That didn’t stop the White Horse Warriors from taking on four challenges including Tough Mudder South. Thank you to Ben and his 13 friends for going above and beyond in the aim to raise £5,000 in honour of Ben’s four year old son, who has alpha-1.
Janet and her sister Susan took on the Caerphilly 10k in honour of Janet’s granddaughter Alys who has biliary atresia, raising a wonderful £500. Alys and her twin Grace were there to cheer them on along with their mum Heidi and dad Ian who also ran the London Marathon this year and raised over £2,000. What a fantastic fundraising family!
Pumps & Gearboxes Ltd
The Pumps & Gearboxes Team made up of Jamie Ford, James Stringer, Chris Barker, Pav Vatani, Chris Long and Steve Gill had a great time taking on the Gung Ho 5k, an exciting inflatable obstacle course. They raised a wonderful £600 for CLDF in honour of lovely little Ada (pictured) and her mum Emma.
Bilton Infant School
A big thank you to the fantastic team of children, parents and staff from Bilton Infant School who fearlessly took part in a mini mud run challenge. Inspired by Eleanor Brinkley, they braved the cold and raised a fantastic £1,315 for CLDF.
Rally Round for Reid
Samantha and her friend Steve decided to do a skydive for CLDF, after Samantha and her husband Alex welcomed their gorgeous twin boys Reid and Eldon into the world last year. Reid was diagnosed with biliary atresia and was their inspiration for supporting CLDF. Since then, their family and friends have rallied round and helped raised an incredible £3,125!
Inspired by her goddaughter Lara, Lacey took on the Potters Arf Marathon earlier this year and raised an amazing £1,105 for other children and families affected. Lara even joined Lacey for the last stretch of the run!
Ros Howell took to the streets of Chicago in May to run a 10K with her son James in memory of her daughter Catherine. The family have already raised over £730 and she is returning to the Great Lakes in the autumn with her husband David to do a half marathon!
Get protected this winter Michelle Falconer, Immunisation Nurse Specialist at Public Health England, explains why itâ€™s important for children with liver disease to have the flu vaccine. For healthy individuals, flu can be an unpleasant infection that lasts for around a week. Symptoms can include chills, achy muscles, a temperature, sore throat, dry cough and stuffy nose. But for those with an underlying medical condition such as liver disease, the risk of developing serious illness following flu infection is higher. Symptoms may last longer and complications can include ear infections, bronchitis or pneumonia. Some people may require admission to hospital. For this reason, all patients with chronic liver disease such as biliary atresia, cirrhosis and hepatitis, are recommended to have a flu vaccine each year. The vaccine can be given to children aged between two and 18 years as a nasal spray and for those children with liver disease, who are aged six months to two years the vaccine is injected into a muscle. Flu circulates in the community each winter with most cases being seen after the middle of November but this can vary year to year. As protection from the vaccine can take up to two weeks to develop, the best time to have the vaccine is between September and early November. This gives the vaccine a chance to work before flu viruses start to circulate in the community.
What is flu?
Flu is a respiratory infection caused by a virus and spread by contact with respiratory droplets or direct contact with respiratory secretions. This means that it can spread in communities and families very quickly. There are different strains of flu virus that circulate each year. Some people may not have any symptoms but those with an underlying medical condition may develop severe illness if they get flu.
What does the vaccine do?
The vaccine stimulates the immune system so that if you come into contact with the flu virus after you have been vaccinated, your body can quickly recognise and respond to it. This means that you will have some protection against the virus but it is important to remember that the vaccine does not protect against other respiratory viruses such as the common cold and that it takes around two weeks to work. As the flu virus can change from year to year and protection from the vaccine only lasts for one flu season, those with chronic liver disease should have the vaccine each year to ensure that they are protected.
Who should have the flu vaccine?
All those aged six months and older with chronic liver disease, including but not limited to biliary atresia, hepatitis and cirrhosis, should have the flu vaccine each year.
All those with chronic liver disease are recommended to have a flu vaccine each year 24
Where can I get the vaccine from?
If you or your child has chronic liver disease, your GP should invite you into the surgery to have the vaccine. If you are unsure whether you or your child should have the vaccine you can always check with your GP or practice nurse. There is no cost for the vaccine for patients with chronic liver disease.
Is the vaccine safe to have?
Yes, all vaccines have to undergo strict tests to ensure that they are safe and effective. For those with an underlying medical condition such as liver disease, the risk of developing serious illness following flu infection is higher.
Can children who have had a liver transplant be vaccinated?
Transplanted children can be vaccinated. If they are immunosuppressed, either due to transplant or their treatment they could still have inactivated vaccines. Parents should, however, take advice from their consultant before having live vaccines. Children may be offered the injected inactivated flu vaccine rather than the live intranasal vaccine if they are immunosuppressed.
Will there be any side effects?
Some people may develop a sore arm around the injection site, others may develop a temperature, headache or stuffy nose but these usually only last for a day or two.
Where can I get more information about flu vaccine?
You can find more general information on the flu vaccine on the NHS’s website nhs.uk/conditions/flu
Remember someone special with the Sunshine Tribute Fund We are currently looking at updating our bereavement leaflets to help families during such a sad time. CLDF Sunshine Tribute Fund at childliverdisease. org/sunshine is set up to remember and celebrate the lives of all the children who had a childhood liver disease or transplant who have died so please use this page to remember someone special to you, whether a child, brother, sister, friend or maybe someone you met at hospital. Light a candle, write a message, make a contribution to CLDFs vital work – this page is for you.
Children’s Liver Disease Foundation continues to fight childhood liver disease and support all families. We continue to place huge value and importance on its children who are sadly no longer with us.
We are holding a Celebrating Lives remembrance service next summer – for more info please visit childliverdisease.org/bereavement
In loving memory Jasmine Mary Alison Shaw 11th April 2013 – 16th December 2014
Barbra Victoria Harding 20th July 1981 – 15th June 2016
Jayden Lee Gellatly
23rd August 2014 – 20th August 2016 25
Learning to help yourself Sometimes it can feel like we don’t have any control over what we think or how we feel. Growing up with a liver condition can make things even harder. But it’s possible to make a difference to our mental health with some simple, easy steps:
Eat well, feel better
Evidence suggests that managing a balanced diet can hugely improve your mental wellbeing. The website youngminds.org.uk suggests: •
Don’t skip meals. Eat three meals a day with two ‘healthy’ snacks (for example fruit or yoghurt) in between. Eat breakfast within an hour of waking up. Never skip breakfast. Try to have at least five portions of fruit and vegetables every day. Try to drink 6-8 glasses of water every day.
• • •
Young Minds also have great resources on exercising for better mental health. Check out their website.
It is going to be a bit of a rollercoaster ride, and you’ll be feeling all sorts of emotions… but trust me: it’s going to be ok! Caragh, 18
Take time out
If you need help relaxing, try the Headspace app. Think of it as a gym for the mind! All you need is an Apple or Android device and pair of headphones. Headspace provides 10 free hours of relaxation, meditation and mindfulness techniques. We’ve tested it, and it’s a great way to give your brain a break.
Need to talk?
Our CLDF Young People’s Team works from 9-5, Monday to Friday, and are here to listen. Call us: 0121 212 6007 Email: firstname.lastname@example.org Hive is our social network for 11-25 year olds. With over 180 members, and a team of Hive Ambassadors working as peer mentors, you’ll find someone to talk to: cldfhive.co.uk Childline (24 hour support): 0800 1111 / Samaritans: 08457 90 90 90
Friends and family
We asked young people what they did to stay strong. Their message is clear: keep good people around you! “To cope, I generally talk to my friends and spend time with them. It works to surround myself with good people.” Emma, 19. “The people around me were the main thing that kept me going so strong! They were all so strong and brave for me that it made me want to be just like them” Joey, 22. “You can’t get through this without a support system. CLDF has done that for me, and so has my family, immensely”. Gemma, 16.
Don’t feel like you’re alone because you’re not. There are so many people going through the same thing you’re going through – don’t let it take over who you are. Sophie, 18
BIG CHRISTMAS GIFT
Give a gift, change a life
The transition from childhood to adulthood can be tough but growing up with a liver condition can bring with it additional challenges. CLDF’s dedicated Young People’s team is there to support young people aged 11-25 during their journey and through these difficult times. This Christmas give a gift and help us to provide life-changing support to more children and young people. This Christmas help us to raise £5,000 to support even more young people
TO GET INVOLVED... / Visit campaign.justgiving.com ke a donation charity/cldf/christmas to ma and leave your festive message ount you Simply text CLDF68 plus the am 70070 would like to donate (e.g £5) to
stake poster Download our Christmas sweep workplace, from our website and get your nds and family school, community group, frie Gift Appeal involved in the Big Christmas
Ellie was diagnosed with biliary atresia at four
months old and underwent a liver transplant aged just six months. Though she is sometimes worried that her liver will become “unwell” again, this didn’t stop Ellie, now 14, from going on CLDF Breakaway last year, a residential for young people aged 12-15 and meeting new people who have had a similar experience.
“When I got home, I felt great. I will never forget this amazing experience. I loved how close we all were by the end” – Ellie
A note about Christmas cards... We know that many of you have supported us for a number of years over the festive season by buying CLDF Christmas cards. This year we have made the tough decision not to sell these as we usually do. We apologise for any disappointment, and do hope that you will still choose to support us this Christmas by getting involved with the Big Christmas Gift Appeal. Visit www.childliverdisease.org/Christmas to find out more about the Big Christmas Gift Appeal and help us to support even more young people, now and in the future. 27
If you have already been to a CLDF event, you’ll know that they are a great way of meeting other people in your situation, sharing experiences and having fun. And if you’ve never been, why not see what they are all about? There is plenty going on around the UK so certain to be something you can get to. Below are details of events for the next few months and we are currently planning lots more for 2017. You can find out more at childliverdisease.org/familyevents
2016 Saturday 12th November
Saturday 3rd December
Festive Family Day
2017 Saturday 4th February
Monday 20th – Friday 24th February Saturday 11th – Sunday 12th March
Talk, Tell, Transform (Young people’s residential) Northern Ireland
Tuesday 18th – Friday 21st April
CLDF Breakaway (Young people’s residential)
36 Great Charles Street, Birmingham B3 3JY 0121 212 3839 | email@example.com childliverdisease.org | cldf-focus.org Registered Charity Number: 1067331 (England & Wales); SC044387 (Scotland) Registered Company Number: 3431169
Autumn 2016 edition of Children's Liver Disease Foundation's magazine, covering various aspects of childhood liver disease.