Hannah and Rob’s story

Finley became very poorly soon after his birth and after tests at our local hospital we were transferred to Leeds General Children’s Liver Specialist Unit. It was a very scary time for all of us as we didn’t understand what was wrong. After lots of tests, X-rays and scans and what seemed a long wait we finally got a diagnosis for Finley, which was alpha-1 antitrypsin deficiency, a very rare genetic liver disease, for which there is currently no cure.

Finley’s condition has to be closely monitored and he goes for regular check- ups, blood tests and scans with his consultants in Leeds. Worst case scenario is that his liver deteriorates and he needs a liver transplant, but we have to take each day at a time and let him lead as normal life as possible.

Our world turned upside down. It’s difficult to explain to people as no one had heard of childhood liver disease, but we finally came to terms with it and decided the best thing we could do was focus on fundraising to promote the charity and to raise as much money to help other families affected.

Since we set up Finley’s Fundraisers we have inspired so many other people to fundraise. We have achieved things we never thought we would achieve and have had amazing support from our family, friends and local community.