“I had never been to a CLDF event and didn’t know what to expect but it was great fun,” says Melissa. “The best bit was building models out of chocolate and meeting other children who have liver disease like me.

“Then a few months later, when my mum and dad went to the conference, I went to Drayton Manor. That was even better. I met more new friends and was able to spend the whole day with them. It was a really exciting day – there were so many rides to choose from.

I am definitely looking forward to my next CLDF event. I have lots of friends at school but it’s great to meet people who really understand what it’s like to have a liver disease”

Melissa with her parents, Julie and Garfield

Melissa’s mum, Julie says: “Because liver disease is so rare, it’s good to know that there is a reliable source of information out there.  Melissa moved to senior school this year and being able to give her new school an education pack helped me feel more confident about the move. We found the national conference really informative and of course it’s always good to meet other parents in our situation.

“Most of all , though, as Melissa grows up and has to manage her liver condition for herself, it’s important that she knows she is not alone.  So I am so pleased she has made new friends through CLDF and am looking forward to her being able to try out new experiences with them as she gets older.”

The post Melissa’s story appeared first on Childrens Liver Disease Foundation.

I think it was when Hugo was about to start nursery when he was 12 months old that I contacted CLDF for the first time to request information for his day care. I remember making up endless excuses in my head about why I might not be able to call, but in hindsight think that I was not ready to face up to the fact that Hugo had a lifelong liver condition, and that calling would mean acceptance of this.

When I called I felt a surge of relief. I spoke to CLDF’s families officer who was so kind and just listened to our journey. It was so helpful to know that if I needed to talk to someone about my worries and how I was feeling, I could, and that there would be no judgement. After that first conversation, Tom asked me whether it would be ok to check in with me in a couple of months, and I remember feeling like he really listened, cared, and understood.

We have been fortunate in that aside from five hospitalisations in his first year with suspected cholangitis, Hugo has managed to be hospital free, growing and developing well and it’s good to be able to share good news on his progress with CLDF as well as the worry and the grief.

We have also found CLDF’s resources helpful, such as the education pack, leaflets on biliary atresia and information on travelling and insurance. Now that Hugo is becoming more aware of his scar, we have started going to some family events too. I do value sharing experiences with other parents who just get it, and who share the same worries and questions about the future as we do. I also love meeting the inspirational teenagers who are just getting on with their lives.

As Hugo grows older, I imagine that he will benefit greatly from meeting children with liver disorders like him, who will understand and hopefully support him. I worry that he might be bullied at school, and about how he will feel when he realises that he has a liver condition. It is so reassuring to know that CLDF run residential events for children and young people and I absolutely love watching the clips of Talk, Tell, Transform (even though I often find myself in floods of tears) I really hope that CLDF will be able to continue to offer such invaluable support.

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My instinct told me just weeks after having my twin boys that there was something wrong with Reid. He wasn’t thriving in the same way has his brother, Eldon. 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!”

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I was waiting for one of these clinic appointments when I met Rich from CLDF. He told me about all the stuff the charity does including Breakaway, a residential trip where I could do a high ropes adventure course and a 24 hour survival course. It sounded great so I said I would like to come.

It was just as much fun as I thought it would be! Not only did I get to do all the stuff I had been promised but I met other people like me who have a liver condition which I had never done before. It’s great when you realise that you’re not the only one. I still keep in touch with everyone who went on that trip – I like to know what everyone is up to.

The other good thing about CLDF is Hive which means I can contact lots more young people just like me. I find this really helpful because most people don’t know what it’s like to cope with the kind of problems we have but on Hive you don’t need to explain that.

I don’t let liver disease stop me doing what I enjoy. My hobby is making YouTube videos. It doesn’t matter how many people watch – it’s a way for me to get my thoughts out there. I do like knowing that CLDF and the people I have met through the charity are there for me, though.  We can all support each other and that’s a good thing.”

The post Jamie’s story appeared first on Childrens Liver Disease Foundation.

“It was heartbreaking,” says Alex. “The doctors told me she would need surgery immediately. I remember asking if this meant she might die and they said she might. Luckily Imogen’s surgery was successful but I still struggled to take in the fact that she has a lifelong condition and may need a liver transplant one day.

“A lovely lady from CLDF came to see me in hospital. She sat with me while I cried and then told me about the Foundation and how they could help us.”

“What CLDF have done for me and my family is truly amazing,” says Alex. ”Imogen is doing well now but one day she might not be. We know they will continue supporting us as a family as this disease will never go away and it never gets any easier. Through CLDF we have been able to share experiences with other families who have been affected and seen wonderful stories of young people who are living full and happy lives despite their liver condition. This is what gives us hope and in our situation, hope is so important.”

Alex’s daughter Imogen with her big sister, Eleanor

The post Alex’s story appeared first on Childrens Liver Disease Foundation.

Our world started to fall to pieces, or so it seemed, when she was less than 24 hours old. Eni happened to wee in front of the midwife on the first home visit and this led to a discussion about funny looking poo. Our midwife said she couldn’t remember why but that this meant something important and after a call to our local hospital we were taken in and advised someone wasn’t right with her liver. At four days old she was admitted to the Paediatric Liver Unit in Leeds and by day 12 she had her diagnosis of biliary atresia. When she was 17 days old she underwent a Kasai procedure, a nine hour operation during which one new bile duct was made using a piece of her intestine.

Eni is now four years old and whilst on the whole her health has been good, she has developed a secondary condition called portal hypertension which will need further attention in the near future. Her condition is relatively rare, affecting around 50 children a year, but it is serious and we know the chances are that one day she will need a liver transplant.

We visit our Leeds General Infirmary fairly regularly and often see Jacquie’s (from CLDF) smiley face in clinic. It so important for us to feel connected to something or someone beyond the medical professionals we so highly regard.  Having a child with serious health conditions can be overwhelming. It’s all consuming. It’s hard. As a family we get on with life as normally as we can and generally do just fine. But we know that Eni is going to have other problems and times of ill health in the future. Our lives may change and there will be little we can do to control this.

This is what has motivated me to raise funds for CLDF. It means I am doing something positive for Eni. This year I did the Great North Run for the first time. Not only did I raise over £1700 but maintaining that level of fitness means that when the time comes for a transplant, I hope to be considered as a living donor.

CLDF is so valuable to us because they help you not feel like you’re not alone. They understand. They help provide fun when the world doesn’t always seem to be that fun.

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