Gidon did not have Celiac disease and so we were referred on to a haematologist. It was not until 2 years later that we finally had the diagnosis Gaucher Type 1 Disease. By this time Gidon, a tiny 3 year old, with an enormous stomach & very anaemic – had a name for his symptoms. We were relieved that the journey to diagnosis was over and we were blessed that there was a treatment available.
After applying to the Life Saving Programme, 3 months later Gidon finally started treatment. Listen to his story.