Big Yellow Friday 2020

He wasn’t gaining weight and his skin was a yellow colour. When his eyes turned yellow, we took him to the emergency walk-in centre but we were completely unprepared for what followed.To be told when your twins are nine weeks old that one of them has a rare disease you’ve never heard of and then goes into surgery for over six hours, then people start mentioning transplants is scary to say the least.Obviously we were anxious for more information but when we Googled biliary atresia, as you naturally do, all the results were from medical journals except for the CLDF page which explained it all in plain English.

This helped me to explain to our friends and family what was wrong with Reid.I quickly found the CLDF Facebook page, messaged them, and within 24hours their families officer had been to see us on the ward with lots of literature. This information wasn’t just for us – there was specialist information for our local GP surgery. I am delighted to say that when I passed it onto them, they reacted very positively. It has led to changes in practices and retraining of staff at the surgery so I now feel confident that future cases could be picked up more quickly.

CLDF also put us in contact with other families so we could talk to them and gain an understanding of how biliary atresia would fit into our lives and what living with it could be like. This has actually led to new friendships and given us support as hospitals can be lonely and scary. And of course the biscuits and tea and friendly ear on their regular visits to the ward are always welcome!Donations from Big Yellow Friday provide Children’s Liver Disease Foundation with the funds to produce a large amount of literature for hospital visits, and also contributes to the cost of a families officer who is dedicated to families affected by childhood liver disease.

When he was five years old he underwent a kidney and liver transplant and consequently missed a lot of his first year at school.. Harrison life was more hospital stays and appointments, procedures and operations than a “normal” baby, toddler and starting school life.“Happily, since his transplant his quality of life has improved greatly and now he is able enjoy is life and be included in activities which wouldn’t have been possible before. However he does have to take daily medication and have regular check ups and because his condition is so rare, it can be difficult for other children to understand the impact.“It was during a visit to the liver clinic last year that we met the families officer from Children’s Liver Disease Foundation (CLDF). It was great to realise that there was an organisation there for families like us with people we could talk to.

“She told us about Wild Camp, a weekend away in the ‘great outdoors’ for young people and a parent. Harrison and I were very keen – it sounded like great fun and nothing we had done before!”So Harrison and his dad headed off to deepest Derbyshire for a weekend of games, campfire cooking and even building and sleeping in their own shelter!“We loved it!” says Mick. “Harrison loves making new friends and learning new skills and he particularly enjoyed baking his own bread and eating pigeon stir fry. I just loved the whole thing.

It was so nice to chat to parents who completely understand our situation and for Harrison to realise that he is not alone and there are other children coping with rare conditions just like him.“He now has the time and energy to catch up with his peers physically and educationally. Wild Camp was such a positive experience for him and he can’t wait to come back.”Mick-Harrison’s dad Donations from Big Yellow Friday provide Children’s Liver Disease Foundation with the funds to continue a national event programme dedicated to families affected by childhood liver disease.

“By this time I have to admit I was in a pretty dark place,” admits Gemma. “Having a rare liver disease can make you feel so lonely, as if no-one knows what it’s like. But I went along and it changed everything for me. “The film making process was great fun but, more than that, it was the people I met.

Suddenly there were people who knew just what it was like to have a liver condition – people I could talk to.” Gemma, who is now 19 is still close friends with the people she met through CLDF. “It’s a massive support network for me and, if I didn’t have this, I know I would feel very differently about my liver condition,” she explains. “I want to make sure that other young people in my situation have access to this kind of support.”Donations from Big Yellow Friday have helped Children’s Liver Disease Foundation to put on events such as Talk, Tell, Transform

“The staff would come into the hospital, talk to the parents and patients (if they were old enough). They would bring in cakes and get anything that was needed. It sounds like a very simple thing, but when you have been living on the ward for an extended period any glimpse of reality helps.”Even after Thomas was discharged from Birmingham Children’s Hospital, the next few months were tough on the whole family as Thomas’ condition did not improve and there were several trips both to their local hospital and to Belfast Children’s Hospital.On September 24 Thomas was admitted to Birmingham Children’s Hospital once more and his family were told that a liver transplant was his only option. Fortunately he did not have to wait long for a donor liver to become available and received his transplant on October 7.

After two weeks he was able to come home and happily he has continued to thrive since. Throughout their experience Thomas’ family has found CLDF’s support extremely valuable. “As well as visiting us in hospital, CLDF organise events here in Northern Ireland which the whole family can attend” says David. “It means Thomas’ elder sisters and brother can meet others who have been through the same experience of having their parents away for extended periods while their sibling has major surgery.

I always feel it is the other children that suffer privately and these events really help as they know they are not the only ones who have been through this separation. “Medical staff do a wonderful job and take care of the patient’s every need but having someone to talk to, having a cup of coffee and a bun handed to you can turn a very stressful and unbearable situation into something that can be coped with and this is where CLDF come in.

The simple act of friendship from someone who has time and knowledge to explain something is more important than anyone can imagine.”Donations from Big Yellow Friday provide Children’s Liver Disease Foundation the funds to put towards a support team to attend hospitals and clinics and meet families such as the Bell Family.

We found out about CLDF from a leaflet in the parents’ room on Kings’ Rays of Sunshine ward and Charlotte, her elder sister Jessica and I all attended the CLDF conference and family weekend in October. Although her condition is now stable, thanks to the care of the amazing team at Kings who still see her regularly, Charlotte’s diagnosis had left her feeling isolated and low and we wanted her to meet other children with similar conditions. I’m happy to say it did the trick! Charlotte had a great time, made new friends and realised she was not alone. In fact, she’s already signed up for CLDF Breakaway in May.

So, this was my motivation to fundraise for CLDF – I wanted to give something back to a small charity which has been such an enormous help and support to us as a family over the past eight months. I chatted with Sophie and Lucy at the family weekend about how I could help and there it started! It started with siting a couple of collection tins in local businesses.

Now I think I have six to keep track of and I’m still looking for homes for more!Big Yellow Friday is a great opportunity to get more people involved in fundraising. I happen to work at Charlotte’s school so we will have an extra big push on it! We’re having a Wear Yellow Day, (including a penalty payment for wearing non-uniform that is not yellow!) and a ‘Guess how many sprinkles on the yellow cake’ competition. Because Charlotte was diagnosed at the end of her time at her primary school, they have also agreed to run Big Yellow Friday there too, as well as in two other schools in the education trust.

So, we should be collecting in funds from four schools in total!I’m pleased to say I’ve had a positive response to Big Yellow Friday, especially when people hear my story and I would say to anyone who is thinking about getting involved just go for it! You can do as much or as little as you like or have time for. It is a great feeling to know that you are contributing to helping others, especially those closest to you.

I am not an event’s organiser nor a sales person, but I am proof that you can approach people and have success! Just ask – they can only say no and might just surprise you! I don’t have loads of time to spare – like many people I have a very busy job – but I feel this gives me something back that most jobs can’t – a warm and fuzzy feeling that you are making a difference!

-Julie, Charlotte’s mum

So when I knew Big Yellow Friday was coming up I decided to ask if they would get involved. I thought it would be a good way of helping other children understand a bit about Joseph’s liver condition and of giving something back to CLDF.They loved the idea and we decided to have a yellow themed cinema afternoon showing the Minions Movie – what else?!The afternoon was a huge success. The children paid £1 to come to school in yellow and watch the film with popcorn instead of Friday afternoon lessons!

And it was a lovely way for Joseph’s school mates to show that they were really behind him. The local paper came along and took pictures, which was a great way of raising awareness. And we raised an amazing £520 for CLDF.I would advise any parent whose child has a liver condition to ask their child’s school about joining in with Big Yellow Friday. It’s a great way for children to show their support and find out about a charity they may never had heard of.”

– Elizabeth, Joseph’s mum

We had started to wonder whether her body could survive it all but she came through it and is now full of energy and doing well at school.We have had so much support from CLDF that we always join in Big Yellow Friday.

It’s a great way of raising awareness of children’s liver disease. So many people know nothing about it at all.Habiba’s school are really supportive. They always have a Wear Something Yellow Day and a cake and samosa sale – we have raised over £2,000 to date.We are already planning next year’s event!”

– Farzana, Habiba’s mum

Thankfully she is now doing really well but the support of Children’s Liver Disease Foundation has been invaluable to us all as a family.So earlier this year I asked the staff at Abbey Primary School, where her older siblings go, if they would like to get involved in Big Yellow Friday and they were delighted to!

I suggested a Wear Yellow Day as it’s really easy to organise and all the pupils paid £1 to join in with that. In addition the Year Two and Year Three pupils put their heads together and decided they would like to do a sponsored walk.

I was really touched to get so much support from children and staff who don’t even know Tiffany. It just shows the response you can get when a school understands that something is directly affecting one of their own families.

They raised a fantastic £1,235 in total.I felt so proud and so grateful that afterwards I went in to do a little talk at their assembly about liver disease and organ donation and the children were really receptive.I know that we can all be a bit reluctant to approach schools about fundraising because they do get loads of requests from bigger charities.

However when there is a personal connection it is a bit different and even if they only do a Wear Yellow Day it can bring in a lot of money.
I always say ‘If you don’t ask, you don’t get’ so go for it!”

– Dee, Tiffany’s mum

“She was diagnosed with cryptogenic cirrhosis, which is a doctors way of saying ‘we don’t know the true cause despite tests,” says her father, Asif.

“We did hear about Children’s Liver Disease Foundation when we were in hospital in Leeds but to be honest we had so much to cope with that we didn’t really engage with the charity at the time.”
Unfortunately Faziah’s condition did not improve and when she was just a year old she was given a life-saving liver transplant.

“Happily Faziah has made good progress since her transplant and now we feel we want to give something back,” continues Asif. “We decided to come to the CLDF family day in York as we were interested to meet other parents in a similar situation and see how we can help.

We also wanted our children to meet other children with similar problems and to create solidarity around the issue”

The York family day which had an Alice in Wonderland theme, provided plenty of opportunity for Asif and his wife Nazneento meet other parents while Faziah and her brother and sister thoroughly enjoyed the pantomime and the arts and craft activity.

“As parents it was great to speak to others about different points on that journey towards transplant,” said Asif. “It brought back many memories and we wanted to offer moral support to others. It was great that the day involved the whole family because it’s important that our other children understand the nature of Faizahs illness and how it affects her and others.

“For Faizah, meeting and making friends with other children in her siituation can improve confidence so we will definitely be interested in future events!”

Dr Jake Mann is just one of the scientists whose work benefits from this funding. His study focuses on the development of non-alcoholic fatty liver disease (NAFLD) in children who have received treatment for craniopharyngioma brain tumours. Young craniopharyngioma tumour patients are more at risk for developing obesity and NAFLD, due to the tumour's position within the brain area that controls appetite and hormone levels. However it is still not understood why NAFLD develops quicker in these patients than other children with obesity.

This research project has also lead to the development of a blood test that could become clinical practice within five years, reducing the need for a liver biopsy in the management of paediatric NAFLD. Dr Jake Mann commented:

“It is early days, but the results of the research are promising and could help shift the way we understand and manage paediatric NAFLD: saving resources, time, and stress for children and their parents.”

Naomi is one of our PhD bursary affiliates. Her study, titled ‘T cell epitopes in Autoimmune Hepatitis Type 2: development of novel therapeutics and biomarkers’, is investigating how the immune system drives liver damage via the recognition of liver proteins. Autoimmune hepatitis type 2 (AIH-2) is a rare and serious liver disease most commonly diagnosed in childhood, often with the requirement for lifelong immunosuppression. Naomi's work aims to identify useful biomarkers for early diagnosis of AIH-2 and to develop peptide immunotherapy which may be able to be translated to the clinic for treatment of AIH-2.

Naomi comments:

``I want to extend my most sincere thanks for all your fundraising on behalf of CLDF. Without the studentship funding from CLDF, this research would not be taking place. We all hope that it will further our understanding of Autoimmune Hepatitis Type 2. Researchers have so much to learn from listening to those affected by childhood liver disease and the challenges that they face.``