When sixteen year old Michael became ill in October 2017 his local hospital, the Royal Victoria Sick Children’s hospital in Belfast, referred him to the specialist children’s liver unit at Bimingham Children’s Hospital. It was here that tests revealed that not only did Michael have the rare liver disease, primary sclerosing cholangitis, but that his liver was so badly damaged, he needed a transplant.
“Whilst we were relieved to find out what was making Michael so poorly, it was a shock to know that a transplant was his only option,” says his mum, Marina. “We are so lucky that Michael only had to wait three months for a transplant and thankfully his new liver is working well. But everything happened so quickly, it was a lot to take in, particularly for someone of Michael’s age who has always been active and had so much on at school with exams.
“So we were pleased to meet the families officer from Children’s Liver Disease Foundation in hospital, who provided us with lots of information on Michael’s condition and what it meant for him.”
When Michael heard about the CLDF Weekender, an event for young people from around the UK who have a liver condition, he decided to go along. “I thought it would be good to meet other people my age who knew what it was like to live with such a rare condition,” he explained.
So Michael headed off to Derby University and following a weekend of team building games, partying and even a drumming workshop, Michael no longer felt alone. “It was great fun,” he said. “I enjoyed all the activities but the best bit was talking to people who have been through what I have. It’s made a big difference to my self- confidence and I now feel much better able to cope with all the day to day stuff.
“Now I know that there are other people out there just like me and that CLDF are there whenever I need them!” Thank you to Michael for sharing his story with CLDF, if you would like more information on Young People support and events click HERE. If you would like information on Family support and events click HERE.