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Jamie’s story

“I was nine years old when I was diagnosed with Budd Chiari syndrome, a rare liver disease I had never heard of. I try to make sure it doesn’t interfere with my life too much but it does mean that I have to take medication and I do have lots of hospital appointments.

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.”