When Ethan was born in March 2014 he was a happy and healthy baby. It was shortly after his first birthday, however, that his parents, Daniel and Lucy, noticed that something wasn’t quite right. Daniel takes up the story.
Ethan developed a severe rash on his legs and began to lose weight. He was taken to hospital where he was initially diagnosed with Henock- Schonlein purpura (HSP). After five weeks in hospital and a liver biopsy he was diagnosed with reactive hepatitis. Subsequent blood tests highlighted ongoing issues with his liver and another biopsy was taken in December 2015 which confirmed that Ethan had developed autoimmune liver disease. Shortly after this we were also told that Ethan had a secondary but linked condition called generalised acquired lipodystrophy.
Reaching a conclusive diagnosis took some time and was stressful. So even though we had hoped for a different outcome, it was a relief to finally know what Ethan had. It was at the liver unit at Birmingham Children’s Hospital, just after Ethan was diagnosed, that we met Jacquie from CLDF. She explained what the charity did and how they could help us. It was so reassuring to discover that there was a dedicated charity that could give us all the information and support we needed and with staff at the hospital we could speak to.
With no family history of autoimmune disease, CLDF has been a major source of information for us. We have received everything from an explanation of Ethan’s condition and the tests which have been carried out to advice on nutrition, travelling with an immunosuppressed child and even an education pack for when he starts school in September.
This summer we went to our first CLDF picnic at Batsford Arboretum. It was a fantastic location and we particularly enjoyed the bug hunting and rolling down the hill full of sandwiches and cake!
We rarely get to speak to other parents who understand what autoimmune liver disease is and the impact it has on a child, so it was great to meet other families at the picnic who could relate to everything Ethan has been through. And while we wouldn’t wish this condition on anyone, it was comforting to know we are not alone.
We will definitely attend future events and, when Ethan gets older, we hope he can join in the many trips away which CLDF arrange for young people. We just need to warn them he eats a lot and is very loud……..!