“We hope that Ava’s story can create awareness for Alagille syndrome and teach other parents the signs and symptoms. By sharing our story, as parents, we hope this allows others to feel that they are not alone because we know that it can feel as though you’re the only people in the world when dealing with a medically complex child and how hard it can be to keep fighting a silent battle for your child every day.”
Hannah and Lewis
Story: Ava was born in September 2021 displaying severe jaundice from birth. After spending several weeks in her local hospital receiving a range of treatments, she was transferred to Leeds Ward L50 for specialist care.
Diagnosis: Alagille syndrome
When Diagnosed: 2022.
Treatment and Outcome: Ava received a liver transplant on 26 May 2022 from her mum as a live donor. Sadly, following post-transplant complications and acute kidney failure, Ava lost her fight for life on 1 June 2022.