Liver disease came into our lives when our second child, Aila, was diagnosed with Primary Sclerosing Cholangitis (PSC) and Auto-immune Hepatitis (AIH).

Aila had just turned one year old and the diagnosis was devastating. I could not believe my baby had liver disease.  The doctor told us not to Google it, of course we did, and it was terrifying.

There was no cure, limited treatments and a progression to liver failure.

Liver disease in children is rare, especially this disease, there was no support. It was a very lonely time for my husband and I.

Aila was put onto large doses of steroid and immunosuppressant medication and we hoped this would put the disease into remission.

It hasn't, but the disease seems to be progressing slowly. We are just about to start a medication which has worked for children overseas, it is controversial and it has taken us a long time to persuade our doctor to try it.

Meanwhile, Aila is a beautiful, happy 4 year old little girl, who loves playing with her big brother and her trips to hospital!

We will not give up hope for a cure.