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Children's Liver Disease Foundation

on 23/02/2017

Every day two children are diagnosed with a life threatening rare liver disease. There are over 100 different types of liver disease and the cause is unknown. The impact on the lives of those affected will vary, many will need a transplant at some point in their lives but all require a lifetime of care. Whilst the medical implications of 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 (CLDF) does to support those people on their journeys.

The true impact of liver disease is best conveyed through the stories of the children affected and the charity’s project ‘Talk, Tell, Transform’ (TTT) is a groundbreaking 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 have helped to foster for these young people.

Three days later I caught up with the TTT young people again at their ‘premier 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. I learnt that the social effects of this disease take their toll in ways I hadn’t imagined, such as being unable to drink with friends, unsightly scars, bloated tummies, the ever present threat of transplant rejection and intensive itchiness under the skin. All of which sound hard enough to endure as an adult, let alone in your teenage years. 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. This year’s videos are not yet released but I would urge you if you do do nothing else then watch Michael’s below to get an idea for yourself.

I join CLDF the week before their 10th annual fundraising day, Big Yellow Friday. Big Yellow Friday is a chance to have fun and join the fight against liver disease by fundraising to support those affected in all ways big and yellow! CLDF are hoping that their 10th Big Yellow Friday this year will be the biggest and the best yet and so I leapt at the chance to get on board the big yellow bandwagon. I was able to procure just over 5 gallons of custard for a bargain price at a local wholesalers and tweeted for suggestions on what to do with said enormous custard supply. 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 together with the help of Robin, Josh and Andrew (thank you again) it all came together!

After (several) hair washes I was at last custard free and able to jump back in the Citroen #nicestcar which still smelt vaguely (but not unpleasantly) of custard in order to head over to the studios of MadeinBirmingham TV to talk about Nicest Job in Britain and Big Yellow Friday.

I spent part of my week meeting other volunteers, including Maureen and Margaret, who between them have clocked up an impressive 41 years of volunteering for Children’s Liver Disease! I then set to work making personal phone calls to supporters finding out how fundraising events had gone and handwriting thank you cards. From Great Wall of China treks to pub quizzes to Star Wars themed balls, the liver community is an eclectic but highly committed bunch! It is always fantastic to see a charity putting resource into spending time thanking and getting to know their supporters.

As part of my week I visited Birmingham Children’s Hospital, one of three hospitals in the country performing liver transplants for children (together with St James’ University Hospital, Leeds and Kings College 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 CDLF and this allows nurses like Sarah to help families make an informed choice about treatment. CLDF work collegiately with the healthcare profession and education sector to develop tools to assist young people on their liver journeys. The app ‘My Liver’ is one such result of this working relationship. Developed in partnership with Coventry University, My Liver helps young people to cope with the transition from paediatric to adult health services providing information, as well as medication and appointment reminders and is an invaluable tool.

Up at the hospital I shadowed Jacquie, one of CLDF’s family team, to meet children and families on the wards and tell them about the support available. We met a young boy Michael* who has undergone his second liver transplant but is now battling with infection. Infection is a very real risk to transplant patients since the medication designed to prevent your body rejecting the liver also weakens the immune system. Despite his delicate state, Michael and his mother proudly told us about his gold medal in tennis this year in the British Transplant Games. The games are designed to motivate post-transplant patients, encourage fitness and increase public awareness of the need for more people to join the NHS Organ Donation Register. The strength of character of some of the liver disease sufferers I have met this week and the way they have overcome adversity has been really quite moving. A number of families on the ward were already familiar to Jacquie, since she and the family team make regular ward visits to each of the three transplant hospitals. As such many of the children are known to staff in the CLDF office, who take a proactive interest in their stories. This is a small charity very much in touch with its beneficiaries.

I have 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. If you would like to get involved in supporting them you can download a fundraising pack from bigyellowfriday.org or if you have been affected by any of the issues then please check out their website here childliverdisease.org for more information.

After hearing the children’s stories this week, I have decided to sign up for the NHS Organ Donation Register and I’ll just leave the link here if you want to think about doing the same.

Best wishes :-)

Alice

* name changed to protect identity

Alice Biggar

Author: Alice Biggar

Alice is our National Philanthropy Manager & current holder of The Nicest Job in Britain.